My name is Stephanie Hughes and I was diagnosed with Crohn’s Disease in 1999, when I was 13 years old.
After years of dealing with painful and embarrassing symptoms, on May 7, 2012, I had my colon removed and was given a permanent ostomy.
The decision to go through with this surgery was a difficult one for me. For as long as I can remember, my mantra was “anything but surgery.” But after 5 hospitalizations between October 2011 and April 2012, I began to realize that while surgery was not something I WANTED to do, continuing on the path I was on was something I COULDN’T do.
I had been through basically every treatment available, including several new and pretty intense medications, as well as tried alternative therapies such as acupuncture and strict diets, but nothing seemed to be able to help my symptoms. I spent years of my life just making it through each day, living my life where my bar for “normal” was far below where it should have been. But I had learned to deal with these symptoms after all of those years and convinced myself that the life I was living (filled with exhaustion and constantly worrying where the nearest bathroom was) was my best life. I don’t believe that anymore. After a lot of thought and prayer, I’m now looking forward to a life of feeling whole and healthy, even without my colon.
Having this surgery gave me my life back. I no longer have to live with the daily pain, exhaustion and worry that I dealt with for years. I have discovered a passion for swimming and running that I never had to ability to pursue prior to my surgery. And I have a better ability to be there for my kids.
I live with my husband Jarrod and our kids, Waylon & Chandler. I take one day at a time as I learn to live with this disease and the repercussions that come with it.
I have a permanent ostomy and live with IBD. I am a writer, an advocate, a triathlete and a mom.
87 Comments
Thank you for sharing your story. I too have crohn.’s and was diagnosed in 2000 at the age of 22. I am now 34 and am blessed to be happily married and have 2 wonderful children. Much of what you wrote in your bio sounds alot like what i’ve gone through and my thoughts/feelings. I’ve lived with this disease for 12 years and have finally decided it is time to have surgery. I will have a permanent ostomy and I’m ok with that. Now the hard part is waiting these few months before i have surgery. Reading blogs like yours and others out there have helped me already and are very inspirational.
February 26, 2013 at 7:32 pmWay to go and congrats on the baby!!!!!!!!!! I received Betty after years and years of pain, agony and accidents. I wouldn’t trade her for the world!!!!!!!! And I also am bad at computers, how do I follow your website? Hugs and no colon, still rollin!!!!!!!!!!!
March 24, 2015 at 7:34 pmThank you so much, Jenn! And I love hearing that you’ve had a good experience with Betty and that she’s changed your world for the better. And over on the right sidebar, there’s a place you can put in your email address and click “Get Emails.” Or I am happy to put your name on the mailing list, if you don’t mind me doing so.
March 24, 2015 at 7:40 pmI am a Journalist of over 4 years that Infected was by HIV disease,this disease has over come my body system. My brain fog and memory loss and physical issues made me a vegetable for 4 years.
November 4, 2016 at 6:32 pmFew months ago i came across some testimonies on how Dr Molemen has been using his Herbal Medicine to treat and cure HIV, Some even testified of been cured from Lyme Disease,Cancer and other infections, I have never heard of such before, due to the fact that i always had the believe that one day there is going to be a cure for this disease, i horridly copied the email address of Dr Molemen and i told him about my condition he told me not to worry that he was going to prepare some herbal medicine for me which he was going to send to me right here in my country, eventually after 5 days of communicating with Dr Molemen he sent me a package which i received and he gave me prescription on how i am to use them, after 2 weeks of taking Dr Molemen Medication i became to feel relief in my body and i told him about it, he said to me that i should go for check up in the hospital to know if actually his medicine has worked, i doubted it but i later went to the hospital to get tested and to my greatest surprise I am a MIRACLE and have recovered from the horror of human immunodeficiency virus,and am practicing Journalism again. I applaud you and your efforts and stand ready to give others information about you and i hope they believe and work with you.
You can contact Dr Molemen
Good job, website looks nice!
April 17, 2013 at 6:15 pmThanks, man!
April 18, 2013 at 6:46 amI’m 36, have had Crohn’s for 15 yrs. I have just recently had my colon and rectum removed. Other than some stitches not healing on my under side everything went great! Best decision of my life!! I get to enjoy any food I want now, which is just a great new feeling! I was very excited to get this surgery done I was so positive through the whole process which helped! I love my bag how great not to have to worry where every single bathroom is and if you’re going to make it. For me it’s complete freedom! I smile and giggle a little everyday about getting on with life and getting to do so many things I haven’t been able to enjoy, the simplest things like going fishing, driving, going to the movies, the list goes on and on. To any one suffering from Crohn’s/colitis get the surgery done! Don’t piss around with getting parts of the colon taken out and having to go back every 3-5 yrs to get more taken out fix the problem right off the bat, no more worrying about it! Having a colostomy is not a big deal at all! Unless people know about it, no one can see anything under your clothes. Just wanted to share my experience because its been the best and most positive experience of my life!!
July 3, 2013 at 1:26 amThank you for sharing, Adriane. I’m so glad to hear that having an ostomy has been a positive change in your life. And while having your colon removed may not be for everyone, thank you for showing that it does not have to be a scary decision and can actually be the thing that gives people back their lives!
July 3, 2013 at 10:21 amI did have the surgery & my colon removed, but I was not one of the lucky ones..like you I was “anything but surgery” so I tried everything the doctor said, plus acupuncture, a naturopath, and other alternative medicine, plus different diets, so in 2001 I had the surgery. I was diagnosed in 1995 with severe ulcerative colitis, affecting the entire colon, and although it got slowly a little better on the inside, I still had the same symptoms. The first year I was hospitalized 3 times for at least 2 weeks each, and then again for a day b/c the 6-mp was increased too high and made my WBC go too low as well as my hemoglobin and I had to have another blood transfusion (each of the other 3 times I had one too b/c I lost so much blood). I was diagnosed with Ulcerative Colitis, and it seemed pretty clear cut symptoms-wise, but in order to control in they had me on extremely high dosages of prednisone…which is why they tried the 6-mp, to see if they could lower the prednisone without me getting worse, but that didn’t work, and I was hospitalized at least once a year from that point on…every time I started to do a little better & we’d decrease the prednisone, boom! I was back in the hospital. So my GI started pushing the surgery, and then the year before I did it, I ended up in the hospital a week after getting out, & this time came home on TPN, only allowed to eat ice chips, for over 5 months b/c I wasn’t getting better. With that & the fact that the prednisone gave me osteoporosis, I was scared of what else it would give me, plus it seemed like higher & higher doses of prednisone wasn’t helping much, and I was “steroid dependent” I gave in & had the surgery. However, immediately afterwards I was having problems, pain & going many times to the bathroom, just like before & I’ve ended up with every complication you could it. Twice I ended up in the hospital with an intestinal obstruction, but only the first time, which was a year after my first surgery, did they have to operate. That was the one time that I really thought I was going to die. I had caused holes in my longs from throwing up so much, and was sick he couldn’t get the test done to see the obstruction, but after some creativeness he finally did, because he operated just in time–the obstruction was cutting through my intestine as he operated, and if he hadn’t been doing it then, I would have gone septic. I have had other problems since…ended up in the hospital a week before the 1st obstruction, with all my joints, from head to toe, severely in pain. No pain med. would work so they had to put me back on high doses of prednisone. I just kept having problems, and it didn’t seem much better after the surgery, that’s for sure, and since I was on medicaid it took forever for them to finally give me Humira so we could lower the prednisone for my joint inflammation. Now I’m at 5 mg and no one will take me off it, they’re afraid of what may happen. But the Humira mostly helps with my joints, though I still get pain, and it’s hard to even stand for 5 minutes without from my hips on down hurting. We moved from AZ to MN and I was allowed on their medicaid program to go to the Mayo Clinic and they found new problems, including fistululas so now they say I have Crohn’s but I’ve not had any inflammation anywhere in my digestive tract other than the tiny bit of what’s left of my rectum, which has always been there, so I’m not sure what to believe. Everyone kept telling me to have the surgery, that I would have wished I had it done sooner, and I guess for most people it works out, but not for everyone. I guess, especially at that point in time, I didn’t have much of a choice, but right now, the Mayo doctors want to do the same surgery over again, this time with a temporary ilieostomy since the fistuluas somehow went away, and then give things a break and go back to the way I am now…but it’s hard to do it. I remember all to well the first one, and knowing I will have two major surgeries, when I’ve had 2 already, is scary and difficult to come to that choice…they’re trying different medicines in the mean time, 2 antitbiotics have helped some, they helped more in the beginning, but when the surgeon did a dilation procedure for the stricture I had recently, my symptoms got worse again. Maybe I want to keep the surgery as a last resort, too. But it’s hard to elect to go through all of that again, especially since I don’t know if it’s going to help. I had a great surgeon before & they say my pouch looks great & everything should be working ok, but it’s not…so I’m worried it’s just me. And maybe it won’t work the second time around either. Really glad you’re doing well. And sorry for such a long post, I’m just feeling lost and trying to figure things out.
November 12, 2014 at 1:36 pmStephanie, My name is Donna and my regular doctor has told me I need to consider having the bowel surgery. I know next to nothing about the two surgeries. I had a urostomy when I was 15 years old. I lived with that for 34 years and when I was 49 my urologist suggested that I have the surgery to put that inside. I had that surgery at Vanderbilt right away and have been delighted to go without a bag for the past 12 years. Now I am 62 and have had a lifetime of unpredictable and uncontrollable diahrrea. Doctor said time to have the surgery I have dreaded my entire life and isn’t it something to be able to go without a bag for 12 years and then have to have another! But, I truly Will be glad to stop having accidents and looking for a bathroom every time I leave my house. I read your story and saw your video and you are quite a tough and caring girl. Sometime I’ll tell you about my LOVELIFE and career. Right now I would love to have some info on the two surgeries and then some advice. Thanks for listening. Donna
September 20, 2016 at 11:23 pmMorning Stephanie,
August 11, 2013 at 4:55 amI have had a colostomy since 3/2013. I see my dr. in August to see if a candidate for re sectioning. Any thoughts on this procedure. I read that some folks are still having bowel issues 2 years down the road. Would it be better just to keep my bag and have no digestive bowel issues or give it a try? Your opinion would help.
That’s a really good question. For me, resection was never an option and I didn’t put much consideration into it, so I’m not sure if I would have the right perspective. Does anyone else have any input?
August 12, 2013 at 9:17 amAlso, I posted your question on my Facebook page (https://www.facebook.com/thestolencolon), so perhaps someone there will have some advice for you.
Well…I had a “Resection” for Crohn’s Disease when I was 19 years old. The result was good, and I was “okay” for around 18 months……then my problems started again….dull aches in the lower tummy, eventually leading on to numerous daily (and nightly) trips to the toilet, loss of weight, could not eat….fistula so…the usual Crohn’s horror story.
June 5, 2016 at 7:55 amThe problem with Crohn’s Disease (also referred to as Regional Illeitis in the past), is that it is NOT localised. Remove one chunk of the bowel – and Crohn’s most probably will flare up in another region of the intestine), so, in the past, Surgeons would do resection afrter resection….while the patient is getting weaker and weaker at each one!! I guess I was lucky that my surgeon went straight for an Ileostomy with me when I was 21, after me having the resection 2 years prior. I was in a sorry state. Could not go out without a toilet being in clear view. Have you faced that sheer “PANIC” when you go to a public toilet, and someone is already using it? I’d had just too many “accidents” when that happened, with the accompanying embarrassment of “having to be taken home to clear up”. I was so weak anyway, and ended up not wanting to leave the house – well – I couldn’t!!
I studied medicine at University but had to give it up as I just couldn’t get to the Uni!!
I knew my Surgeon well…..in his later years, and a brilliant Surgeon. When we met for one of my frequent visits, I was just 6 stone in weight, Anaemic, dehydrated and exhausted. He said….”well, my Dear, I think we’ve got a date!!”. Within 2 weeks I was in for my Ileostomy op. I had to be “fed” intravenous drips for 2 weeks to build my strength for the op.
There are usually two teams of surgeons for a total Ileostomy Operation (involving removal of the anus), one team working on the ostomy (usually Consultant level) and the other team working on the anal area. The operation takes some time, so two teams are often necessary, particularly with very weak patients (as I was), to reduce time in the Operating Theatre.
My surgeon saved my life. I’ve never looked back. Had an initial blockage 10 days after surgery, due to an adhesion about 3 inches below my stoma (see one of my other entries on here). I was eating normally after a month, put on weight, felt stronger day by day, and started to go out again once I had “mastered” my Ileostomy appliance. On to horse riding again, swimming, walking, well,everything really, AND….without the need for a toilet being in sight!!
In conclusion then…..Resections CAN SOMETIMES work, but it’s rare. They may work for a while…but you’ll probably be back to your surgeon, with your usual symptoms. In my opinion – straight to an Ileostomy in severe Crohn’s and UC, so you can start to live and enjoy your life again as quickly as possible, with no more horrific suffering.
Anyone can feel free and are welcome to contact me.
Hi everyone
September 21, 2016 at 12:15 pmI had an ileostomy to allow my bowel to heal after they remove a colorectal cancer tumor. I’ve been through chemo and radio treatments, so the remaining of the bowel was affected by it, and also my colon being one foot shorter kind of is a big change to re adapt.
So I have been issues even 2.5 years after the ileostomy reversal, not been easy, know where every bathroom in town is, lol, my work place has 3 bathrooms for a staff of 20, so that’s nice, hahahaha.
So the doctor asked me if I wanted to save my bowel and try to make it work if he had the chance to save enough space to do the resection, he also told me that if there was not enough space then he would decommission the rectum and such and I would have permanent colostomy. I opted for the chance to keep the normal “fashion” of going to the toilet and not to use the bag forever.
Hope is the last thing to die, as I always say, and I am still trying to save my bowel and I still have in my mind that I can go for the colostomy and put and end to it, but still trying to save my bowel, hope is the last thing to die….
With the surgery of the type I had, they mess with a bunch of things right there right, so I had a bit of pelvic floor issues…. so one day, a year after the reversal, all of a sudden I could pee standing up (plz excuse the graphic language), wow, that was amazing, I couldn’t done before because my pelvic muscles were all confused abd didn’t work coordnated. My point is the natural fuction for which the humans were designed are the best.
If it was me, I’d try to get my normal function back……. hope is the last thing to die, right?
Cheers
Hello Stephanie
August 14, 2013 at 4:40 amMy husband and I fly to see our daughter in Holland on August 11th and my stoma didn’t like the plane at all, lots of pain, my surgery was on May this year. We fly KLM and the crew was so great and sat me in by them through the flight. I was just wondering you have never said what you write, is it books we can buy?
Hi Karin, I’m sorry you had a bad experience flying. I wonder what caused the pain. But no, no written books yet. One of these days, Karin, there will be 😉
August 19, 2013 at 6:25 pmHi Stephanie,
August 18, 2013 at 9:49 pmI am 48 and was originally diagnosed with ulcerative colitis, had my colon removed in 2000, and currently have a j-pouch. I almost immediately continued to have issues and the dr discovered that I have Crohn’s instead. I could really relate to your story. I think I know where every restroom is in town! I haven’t had a full night’s rest in years. I have finally decided to have surgery again to have a permanent ileostomy. My surgery date is September 25. I am confident that I have made the right decision and can’t wait to get my life back!
Good afternoon, Stephanie.
August 25, 2013 at 3:18 pmHere is a good one. I was diagnosed with UC on 9/18/1968 which was on my birthday. I was just 18 years old On 1/21/1970 they did a total colectomy so, currently I have had my ileostomy for over 43 years. Lots of stories, been around the world and still living life. Two things #1 drink lots of water. #2 If you are a diabetic or not, watch out for sugar free foods that contain Sorbitol or any warning label that states ” May have a Laxative effect”, I ate some cookies and next thing I knew I was “throwing out fluid” out of my stoma for over an hour. My fix was Gatorade and peanut butter crackers.
Having a ileostomy or colostomy really isn’t such a big deal. We humans are very adaptable.
Gregory, it is good to hear from a veteran ostomate. I love the reminder that even in the long-term, having an ostomy won’t slow you down and that it can continue to mean a better life for people. And great advice. I cannot stress enough how important drinking a lot of water is! And I hadn’t heard that about Sorbitol, so I’m glad to know to look out for something like that. Thanks again for your comment.
August 27, 2013 at 1:43 pmThank you, just thank you! It feels good to know your not alone and that your not crazy. I always feel like I’m not really sick it’s just all in my head, but after ending up in hospital last year I realized that my UC was real and all my meds and diets were not going to work! After deciding to have my colon removed and a jpouch put in I am struggling with my illostomy bag and obstructions in my small intestine. But I found your site and feel so much better and not so alone. So thank you!
December 4, 2013 at 9:56 amNicole, your message means so much to me. I’m sorry that you’ve been having issues with your ostomy bag, but definitely know that you’re not alone and there are lots of people out here willing to offer advice or encouragement if you need it. I’m glad I could play a small part in helping you to see that you’re not alone 🙂
December 19, 2013 at 1:35 pmIn my 41 years as an ostomate, and as the National President of the United Ostomy Associations of America, the ONE thing I can tell you that has been the MOST beneficial is TALKING about any issues you may have. We have all gone through some type of the surgery and we all have had different ways and techniques of coping with the outcomes. By speaking to others, you learn things you may have NEVER known and you learn what advice you may want to use for yourself and what you decide you would rather not use. Having an ostomy is a personal journey and as long as the path leads to a HEALTHY, ACTIVE life, full of joy and passion, there is no right or wrong way. But for the newbies, it may be a way to show them that there are multiple ways to achieve the same outcome. And for the newbies, please KNOW that we are there, ready to answer your questions and help each of you in any way we can.
December 13, 2013 at 3:21 pmThank you for sharing your story. I’m 16, and in September I had a barium test which showed that I had a 5inch stricture in my small intestine. My doctor put me on Humira and I’m still not sure if it’s helped. I’ve had my good days, but like you, my level of normal is below what it should be. I have an appointment tomorrow, and I’m dreading what kind of solutions we’ll come up with- in particular, surgery. I’ve been tossing the idea around virtually since I was diagnosed in 2012, and I’m starting to get more comfortable with the idea. Less afraid, not really, but I can bear to think about details relating to surgery now. I’m starting to think that as soon as I get this “surgery will screw me over later/16 is too young to start this” idea out of my head, I’ll feel better. I’m just really nervous, and this will be a giant leap of faith, whenever the time comes.
January 7, 2014 at 1:48 amNicole, I completely understand how nerve-racking it can be. It took me a while, too, to even be able to THINK about an ostomy as a possibility. But if it does come down to that, I have found that it can be a great thing and something I sometimes wish I had done sooner. If you ever want to chat, feel free to email me at stephanie@stolencolon.com. I hope your appointment went well!
January 9, 2014 at 11:46 amAs someone who had the surgery at age 18, I can understand how Nicole feels. now looking back 40 years, it WAS the best thing I did. Free of illness, medications and pain and able to LIVE my life. It was scary, but the benefits far outweighed the fears.
January 9, 2014 at 11:59 amYou are amazing
January 19, 2014 at 9:19 pmI wish I knew of you in 1981 when I was dx with UC
I had total iliostomy in 1986 then b.c.i.r. In 1995
It’s great
I went back to school and became RN in 1994
Unfortunately, not done on Crohns peeps
You are an inspiration and refreshing to read
Bravo
Mary
Thank you so much, Mary. That’s so great that you went back to become an RN. I know that people like you are able to provide the best care since you really understand what patients are going through.
February 9, 2014 at 10:32 amHi Stephanie,
March 2, 2014 at 12:40 pmJust found your site. I became ill when I was about 13 and was diagnosed with ulcerative colitis in November 64. Following treatment by Dr Sydney Truelove a world specialist in Oxford, England I managed to last til Friday 13 September 1968 when I was 17 before I had my surgery – at which time I was told Crohns Disease.. In those days if the disease was in the colon they couldn’t tell till they operated. My surgery was initially temporary but from the off I told Dr Truelove I didn’t want the surgery reversed so March ’70 after a review it was made permanent which means “His Lordship” will be 46 this year and I wouldn’t swap him for the world! Thank goodness I have been really healthy – people don’t believe me when i tell them I have “a bag” – “they don’t notice it”
Mini skirts were on their first outing when I had my surgery and bags were limited in style and choice, non of your disposable / skintone / small – my bag was almost as long as my skirt when I sat down!
So all you guys out there who are/have been putting off the surgery – I thoroughly recommend it. It’s much better than having to know the toilet/restroom map of everywhere. Join whatever association/group may be near you – you can be surprised what you’d learn from others. Plus did you know we are among the best dressed people – it’s true – maybe we are subconsciously making sure we project a really good image of ourselves. Be proud and healthy, live, enjoy and appreciate life every day – it is for living you know.
Hi Stephanie,
June 6, 2014 at 6:44 pmI just found your blog. On May 25th, I had emergency surgery for diverticulitis which had caused a rupture in my intestines. The diverticulitis had turned into peritonitis and was causing me excruciating pain. The doctors installed a temporary stoma, which will be taken off in 6 months. I also am a very active person with a social life and a former triathlete.
Mario
Exact same situation Mario, diverticulitis lead to a perforated colon and peritonitis. I’ve never known pain like it. We’re lucky people to have survived it, many don’t ! I’m still considering whether or not to have the reversal, will let you know. My email address is jamess90@btinternet.com if you want to chat further.
June 24, 2014 at 5:06 pmStephanie, I read about you on Reagan’s site and knew I had to meet you. I’ve read through the comments above and I so agree with Reagan’s assessment. You are such a valuable resource for others and the interaction is great. Although we have different medical subjects we support, all medical subjects are necessary for an integrated body to function.
June 12, 2014 at 5:15 pmSheri, it is fabulous to meet you. Any friend of Reagan’s is an automatic friend of mine 🙂 It’s great to have you here and thank you for your encouragement. I appreciate it so much.
June 13, 2014 at 5:00 pmI’ve had UC since I was 24 and I’m now 36. Initially the diagnosing Dr thought it was Crohns but the lab and biopsy said UC. Since then I’ve had an appendectomy and had my gallbladder removed and tried most all therapies. I had remission at one point with either a cocktail of “alternative” treatments or just simple luck and random remission, I’m not sure honestly. When I turned 30 I was diagnosed with PSC, more or less IBD of the bile ducts. So far that hasn’t been an issue, but it’s certainly a worrisome health “time bomb”.
June 25, 2014 at 10:12 pmI’m glad to see surgery has helped you and many of your commenters. This blog has certainly taught me new things about something I thought I already knew enough about.
A couple questions for you and your readers: 1) are there any whitewater kayakers out there with ostomies? Does the skirt or the thrashing water cause issues? And 2) are there any PSC’ers out there who have had your condition 15-20 years or more without a transplant?
Check out the video of wakeboarding on stealthbelt.com. I don’t think rafting will be an issue.
October 7, 2015 at 2:28 pmStephanie,
June 28, 2014 at 5:58 pmI am slowly going back and reading different articles in your blog. I figure I may as well explain my story behind my permanent ileostomy, in case any others can relate or use the information. I actually had complete colectomy and hysterectomy in December of 2013 due to a second occurance of colorectal cancer. I was diagnosed with stage 3 rectal cancer in 1996, and went through a major resection, chemo and radiation at the age of 28. My father died of colon cancer at age 31. I have since had colonoscopies every 1-2 years for the past 17+ years. Last fall my GI found 4 tumors in my colon…after clean scopes for years! He was determined for me to have EVERYTHING removed and insisted my life would be better with an ostomy. Over the years, the radiation had taken quite a toll on my digestive track and I, too, knew where every public restroom was in our city! I didn’t realize it until more recently, but I basically suffered the same symptoms as Crohn’s patients. I read everything I could find about colon cancer and added fiber and whole foods into my diet as much as possible. (Probably what continued to make things worse…in hind sight.) This January I had genetic testing done, and discovered (as we had predicted) that I have Lynch Syndrome. People with this genetic syndrome are at much higher risk of developing particular cancers, especially colon, rectal, and uterine cancers. I think I will eventually get to the point of feeling better. I already feel FREE of the bathroom runs and the worry of not making it in time. However, after two stoma revisions between Dec and Feb, I’m having a ton of skin issues! I just cannot get my skin to heal. I have a loop stoma, due to the amount of scar tissue build up and difficulty getting the stoma to cooperate. The WOC nurse I meet with has helped a lot, but also feels like my husband and I have already become pros and are doing just about everything we can. I’d love to have more feedback from others, as I am still a “newbie”!
I also have tons of questions about diet and foods! After years of trying to get enough fiber, I’m so confused about what to eat now! I was in a farm co-op and ate a lot of fresh vegetables, but now I’m afraid of salads and raw veggies. Am I crazy? My amazing friends recently got me one of those Nutra Ninja Blenders, and they blend whole fruits and veggies to a complete smoothie texture, but should I be juicing instead? It still has tons of fiber, if you leave all the skins on the produce. But it’s all definitely pureed. I’d love to know about what others have done to keep a balanced diet, without the fear of causing a blockage. I definitely drink a lot of water! I can be a spokesperson for SmartWater, with its added electrolytes!
Thanks so much for sharing your story and opening up such a positive platform for new and veteran ostomates to share!
Laurie, Houston TX
P.S. I’m not in the mood to proofread and edit, so forgive any typos or other mistakes! ; )
Hi there Laurie, It’s been 2 years since your post, but I just found this site.
July 28, 2016 at 12:09 pmI had colorectal cancer in 2013 and had a resection, with a temporary ileostomy for a little longer than 1 year, which has been reversed now (2014), but been having lots of problems since, and thinking on getting a stoma to get my life back.
About the fibers, I’ve tried a lot and they only make me go more to the washroom, the only think that has worked is soluble fiber; but I remember when I had the ileostomy I could eat anything and if it was too watery, like when I had a beer, a imodium would solve it.
Hope you get this.
Cheers
Tony
I had skin problems around the stoma. Misery, I know. A nurse I had specializing in ostomy and wound care told me that if your hormones are not balanced, wounds won’t heal well. I went and got the blood test and have been taking bio-mimimic hormones for 8 years now. It worked for me.
August 9, 2014 at 5:25 pmAny recommendations for a good ostomy bag? Best brand and type? I love the Sensura mio one piece drainable but I always get leaks. The lady at coloplast thinks that I won’t be able to use it due to ileostomy output being too acidic for the type of adhesive. Maybe you have tips on how to apply the bag better so I can make these bags work. What bags do you use? Thanks 🙂
December 2, 2014 at 7:55 pmThis is a hard question, Kathleen, since there is no “right” answer. I personally use Coloplast’s 2-piece Flex, but I know that’s not the answer for everyone and it all depends on what works best for you. If you haven’t already, I would try all the major brands. They will send you samples if you request them. That way you can find the best option. Eakin seals are also an option. They don’t work personally for me, but I know a number of people that use them and have stopped the leaks. I also use a hair dryer to warm up the bag before putting it on. It helps it stick a little better! Hope that helps.
December 5, 2014 at 10:10 amKathleen…..I also got a leak every time I wore a Sensura Mio. I use a BOMB-PROOF bag, which I have never, I repeat NEVER have had a leak from. You are welcome to email me for the bags details if you wish, or anyone else is welcome to contact me. There is NOTHING worse than wearing a bag you could not do ANYTHING while wearing.
June 5, 2016 at 8:16 amSorry, folks….my email address is teddyburr@hotmail.co.uk for info on my BOMB-PROOF bag and seal I wear. I know everyone is different, but I cannot imagine anyone having a problem with this bag. By the way, I’ve had my Ileostomy for 45 years now! and have tried nearly ALL appliances out there….
June 5, 2016 at 8:19 amThank you for sharing your story. I too have had Crohn’s Disease for quite some time; diagnosed in 1997, just before my 11th bday. Since then have been on just about every treatment out there, my first bowel resection at 15 and continued struggles. In December I decided to have a small portion of my colon removed. It was scar tissue build-up from my previous surgery. Unfortunately I came out of the surgery with an ileostomy. None of the tests prior to surgery showed how inflamed and affected my colon was; the surgeon was unable to reconnect. Now, at 28, I am learning to adjust to life, as I always have and am finding blogs like yours so helpful. I also started one about a month ago to help me through this process.
February 10, 2015 at 10:48 amHi Tia, thank you for sharing. I can only imagine how difficult it would be to wake up with an ostomy when you did not expect it. It sounds like you are staying positive, which I definitely think will help you get through it. I love that you started a blog, as well! It’s a wonderful experience and I hope it blesses your life as much as it has mine.
February 23, 2015 at 6:26 pmStephanie, I was just wondering if you have considered attending the National UOAA Conference in St. Louis this year Sept. 1-6 ?
February 10, 2015 at 12:42 pmWe would love to have you join us all there.
I just turned 75 and have fought UC since 2009. Just recently my Gastro doctor advised me to have an Ileostomy to prevent colon cancer.
April 2, 2015 at 2:03 pmRight now I am in a search for a surgeon . I live in Waco, TX and can be flexible with regard to travel.
Everyone’s stories are very helpful to a candidate like me. Thanks for sharing.
So glad you have found some encouragement here, C.C. Please always feel free to reach out with any questions or if you need any advice.
April 16, 2015 at 11:37 amHello Stephanie. My name is Alison and I am 39, and have had Crohn’s since I was eight. I had my ostomy placed in 2001 and had it moved in 2005 along with having my rectum removed. I had a son in 2011 and boy/girl twins in 2014. I have no doubt the ostomy gave me my life back.
April 16, 2015 at 6:21 amThank you so much more sharing this, Alison. I love hearing from other moms who have been through the surgeries and pregnancies and had positive experiences. So glad it has helped you so much.
April 16, 2015 at 11:37 amHi Stephanie,
April 28, 2015 at 12:41 amI was doing a Google search on ostomy appliances for runners and came across your site and your story and advice for running with an ostomy. I really appreciated your comment about not being a fan of running but running because you can. That was so me, or at least it used to be. My story is a bit different than most of those on this site but thought I’d share.
Thirty-eight years ago, when I was 22, I had a rupture in my small intestine that occurred at the same time as an attack of appendicitis. My appendix was removed but the surgeon missed the rupture and the short version is that a little over a week later, I had a portion of my small intestine removed and wound up with an ileostomy with a successful reconnect 10 months later. Then the fun started. I had many symptoms that mimic UC, i.e. urgent and frequent trips to the bathroom, fatigue, cramping and burning when having a bowel movement, decrease in appetite, etc. However, my symptoms occurred because the section of the small intestine that was removed was an area that reabsorbs bile (which is what breaks down fats and is caustic). I had a miserable year but was lucky enough to find a physician that understood what was causing the problem and prescribed a medication that, within 24 hours, made the bowel related symptoms vanish.
i just turned 60 at the beginning of February and after about 6 months of progressively worsening symptoms that were, again, much like UC, I was ordered an endoscopy and colonoscopy and, (the short version() I was diagnosed with colo-rectal cancer. I’m on my 4th week of a 6 week regimen of radiation and chemotherapy.
The plan is that after this first 6 weeks of treatment I’ll have a 4 week break and then surgery to remove a portion of the rectum. If the radiation treatment was successful and the tumor has shrunk enough, I’ll have a temporary loop ileostomy for 3 months to allow the colon to heal. If not, they’ll go straight to a permanent colostomy.
I’m actually okay with it either way although I have to admit I’m leaning towards a preference for the temporary. It’s been awhile since I wore a bag but still remember the leaks, slippage, worrying about what I was eating, clean up, etc. but, after reading your site, I’m relieved that it appears that there are newer and better appliances out there (even if there are still some of the same old problems).
I used to run and over the past couple of years had been working my way back but over the past year couldn’t get past the fatigue. I still plan on taking it up again after I’ve healed from the first surgery. Your (and others) advice and experience gives me hope that it’s definitely not out of reach (bag or no bag).
Definitely bookmarking your site. 🙂
Hello Bill,
July 28, 2016 at 2:32 pmI had colorectal cancer and had a temporary ileostomy, for almost a year. Then after the reversal the show began, lol. So it’s been almost two years since my reversal and I am starting to think that a bag would be better and would give me my life back.
Let me know about your surgery and how are you coping, I know it’s been more than a year since, but….
Cheers
Tony
Hi Bill!
August 22, 2016 at 2:29 pmI was diagnosed with rectal cancer in May, and just finished my 6 weeks of chemoradiation. I definitely have walked in your shoes! I am awaiting surgery next month; they will remove my rectum and anus. Because my cancer was so low, they don’t anticipate a good outcome with a temporary ileostomy followed by reattachment, so I’m opting for a colostomy from the outset. Scary, but I think it will be way better than having poor bowel control. As you are probably just starting to find out, the last couple of weeks of radiation can be pretty tough, and I definitely know where every public bathroom in town is! No thanks. I’ll take the bag.
Anyway, bear in mind that a colostomy is different from an ileostomy; I’m seeing that people tolerate it much better.
Good luck with your treatment, hang in there through the rest of radiation, and ENJOY feeling better between radiation and surgery. I started feeling like myself again within about 4 days of their stopping the assault!
Wow! Your pregnancy story sounds a lot like mine! I had to actually have surgery while I was pregnant and get an ostomy. My son was born 1.5 months early. No problems! I had a reversal surgery after I stopped breast feeding. Tough recovery but feeling better each day! Hope everything goes well for you and the babe! Also, I saw you’re in Raleigh! I’m also in NC…I had all of my surgeries and the birth of my boy at chapel hill! What about you?
June 13, 2015 at 2:40 pmHi Stephanie my name is Jax. I have Crohn’s disease and used to have to know where toilets were & how long that you could be out with the meds taken to help stop any movements. I had an ileostomy 12 months after diagnosis, after much trauma and experience and crap that goes on with this disease but now I have been told the disease is out of remission and I’m angry about it. I remember how I didn’t handle it before and will this time. I have so much support this time around that handling it is nearly easy. You’re a very brave woman to put everything out there and to show people that the stigma of the bag is pretty well now obsolete. I too had that but wouldn’t be without my Mr Wilson (stoma). I run a support group on the Gold Coast in Queensland Australia and have many people ring up about the simple things of stoma – cleaning, caring for it, leakages and everything of the sort. I am going to share this story on our website and on our Facebook site Gold Coast Ostomy Support Group. Cheers. Jax
June 13, 2015 at 9:11 pmThank you for having the courage to talk publicly about your life and journey. I am 19, suffering with Ulcertive Colitis for two and a half years now and on the path to surgery, but absolutely terrified of it and wether or not I am making the right decision to go through with it. You are beautiful and show me that it is nothing to be ashamed of. I hope you truely understand how thankful I am
June 13, 2015 at 9:17 pmHi
June 28, 2015 at 2:23 pmI’m a long term ileostomist.
I was diagnosed with UC in 1966 at the age of twenty and suffered 8 years of the horrendous symptoms which haunt all sufferers
We decided ( my wife & myself ) that the only answer was t have the op.
I thought at that stage that that would be the end of my active and sporting life. However I could not have been more wrong as I have lived a very normal lifestyle, never allowing my bag to prevent me doing anything ( except skinny dipping ).
I started playing rugby again at the age of 30 and played until I was 47, this included playing at various times in the same team with each of my 3 sons. The last time I played was in Veterans game on tour in Montreal at the age of 57.
I have eaten & drunk anything that I fancied wherever I was in the world
I hope that I am not boasting too much, but I just like to stress that, providing you are otherwise fit & well, an ileostomy need not affect your life.
Incidentally my mother had this procedure 5 years before I did and is still living an independent and active life.
She will be 96 in November.
I had an emergency ileostomy while working overseas after a biopsy to check an abcess went bad. Last thing I remember is someone saying put him under general anesthetic right now. Woke up with my stoma (named “my little friend”, as in “say hello to my little friend”). Horrible medical care (they placed the stoma badly leading to a hernia) in the country I was in, gave me a post operative drain wound on the left that led to a C-diff infection and a nice scar from my belly button down to the groin ending in a now healed wound caused by premature removal of the stitches, after taking out about 12 inches of my lower intestine as it was perforated. Lost so much weight went to a point where I looked like a POW. Found out I also had non Hodgkins lymphoma and HIV (evidently picked up in Africa while working as a contractor) have been blessed to have had a 5 log drop to undetectable levels. Wife (HIV free-thank God) and sister convinced me to come back to the US and entered a VA hospital. Docs told family I had 3 weeks to live. Entered hospital in Dec 14 at 140 lbs when normal weight was 210. Put on massive regimen of drugs. Finished chemo with no nausea, no loss of appetite and as of last week, docs are 90% sure no cancer-“F%kc Cancer!”. In fact nurses called me a mutant in that appetite increased while on chemo and I continued to gain weight back. Traded back from VA to local university hospital and back during hospital stay. The transferred from hospital to less intensive community living center (CLC) attached to hospital. Blood clotting in legs and arm due to inactivity and extended time with a PICC line. PICC out and much better Hickman line in. Discharged in April from CLC and at home. Drain line removed and healed, though docs believe I still have infection in my abdomen which may need surgery. Huge shout out to the VA medical team…they get a lot of bad publicity, but the one where I am at is world class.
June 29, 2015 at 7:51 amStill hopeful that my ileostomy will be corrected at some point, but very much prepared to live with it. Glad to hear so many people have a positive attitude when dealing with this. For me I had gotten to a place I was resigned to die, but the first emergency room doc who saw me in the US, asked me if I wanted her to be blunt and I said of course, and she said you may not live through this and that reignited my warrior spirit. Today I am back to 212 lbs, having gained back 70 lbs in six months. Like I said I am hopeful, but ready to battle whatever is next. Fight, fight, fight!
Last night got some leakage after heavy liquid output and when changing the base and bag, I had the wonderful experience of a surprise that “my little friend” stoma had developed…a second output hole near its base which became active while doing the change. Sent my docs a message to inquire if this is serious and in researching this came across you blog which has been very useful. Has anyone else had the experience of a second output hole developing in the stoma near the base?
Thanks and best wishes on the new future addition to your family!
Hi! I’m an athlete with UC. I am considering a colectomy. I’m very curious about how your half marathons worked with your bag? I’ve done two (with Immodium).
September 20, 2015 at 9:26 amHi MM,
November 20, 2015 at 11:48 amI had ostomy surgery 5 years ago due to cancer. Prior to getting sick, I’d been marathoner and triathlete. Once radiation and chemo were finished, I was able to start training again. Like you, I wondered what racing with a bag would be like.
It’s different but very doable. I’ve since competed in marathons again and did the full Ironman plus a number of shorter races. Keys are finding a belt or wrap that you like to hold the bag securely and using a barrier with strong adhesive.
The main thing is to build up slowly – which would be part of your training anyway – and test your supplies and race hydration/nutrition prior to the race.
Good Luck!
Chris
Thank you for sharing. I my anal cancer has returned after 9 months after treatment. So Dr’s are saying I will need a colonostomy. To say the least I’m devastated. ..but the alternative is certain death. Sooooo….it it what I have to do…I have been reading like crazy about everything to do concerning colostomy bags….I’m terrified of the surgery and recovery. ..I have faith I will be ok.
December 25, 2015 at 4:33 pmTracy,
December 27, 2015 at 9:06 amIt is tough to hear that news but, as you say, having the surgery can literally be a life saver.
I know it seems devastating but you will be surprised how quickly life seems normal again. It becomes something like wearing glasses. Sure there are times when it’s a real pain but you can – and will – do the things you did before surgery.
Good luck with the surgery and know that there are lots of people in the same boat and wishing you the best!
Chris
I am 50 years old. I have had Crohn’s Disease since 1985 PROBABLY. It is believed I had it in the US Navy but was not diagnosed for sure until 1997. My doctor says I am one of those fortunate ones. I did not have to have any surgery (other than the exploratory lap in 1989 and the general surgeon did not know that was Crohn’s Disease we were dealing with back then). In 2008 I got very sick (I had been very sick off and on for years – never a true remission – even now) – anyhoo – I had both diverticulitis AND Crohn’s Disease of the colon. In January 2009 I underwent surgery to remove the colon. Rectal stump was left in hopes of a reconnection – that would never be and I was thankful for that as my rectum was completely diseased – so badly that when I was put out for surgery I started leaking the “nasty” stuff I had had been telling the surgeon – he demanded me to be opened me up immediately in November of 2009 so they could remove the rectal stump. I, too, feel I have a second lease on life with my bag. I know it saved my life. Last month my husband and I celebrated 50 years of marriage. We were only able to have one biological daughter who will be 29 this month. Back when Stephanie was under a year old I worked for an adoption agency. During that time I knew that I wanted to adopt children .. . . well, would you believe we have seven adopted children???? Four adopted from Russia (the last three adopted were a sibling group of 7, 4 and 19 months old) – they are now 16, 13 and 11!! Our oldest son was adopted from Russia when he was 4 – he will be 19 soon. Then there are our beautiful Hawaiian daughters who came home with us from Pearl Harbor Hawaii after my husband’s last duty station. Our second oldest daughter was a private adoption – she is our miracle child – born with a brain deformity none of us knew (not even the birth parents) – that brain deformity caused her a mild CP type injury and epilepsy – However she married in April her dream guy and they are having their first baby in about three weeks. Not only am I the mother of 8, wife of one – I am grandmother to 6 almost 7. One may think this is a dream life – but we have had some serious heartbreaks I cannot discuss here. But what I will tell you is my family is glad I am alive and still kicking. 27 days in the hospital was much longer than anticipated when I had my colon removed and sepsis this past October could have taken my life too. But The Lord has bigger, better and richer plans for still on this earth.
January 17, 2016 at 2:34 amThis is s truly beautiful story. Thank you for sharing. I’m so glad having the surgeries have given you this new life!
January 17, 2016 at 8:14 amHi Stephanie…my name is Jenn and I have had my ileostomy for almost five years now. You are an inspiration to me. I feel the same way you do. This is a love/hate relationship… Me and my ileostomy. You make me feel like I’m not alone. I live in a small town and its difficult. I did a Google search and you popped up…thank you. Thank you for saying that it’s OK not to be 100% ok with this. I felt like it was just me. Thanks for helping me to feel more positive about this. Sending a smile your way!
January 21, 2016 at 10:23 pmStephanie,
May 28, 2016 at 10:51 amThank you for your wonderful story! I had a history of UC & had to have surgery due to dysplasia on my last colonoscopy. I have had 2 J-pouch surgeries which failed therefore now I have a permanent colostomy. I saw in your story you are a swimmer. I have not tried swimming yet & am fearful my product might fail. Do you have any suggestions on swimming? I would appreciate your thoughts.
Susie
Hey Susie, swimming never caused much of an issue for me. The bag would get a little soft around the edges but would be fine when it dried. It might make a difference, though, depending on the brand. I’m not sure. But I wore a one-piece suit for swimming laps and it kept the bag secure. If you ever have issues or concerns, you could also try Coloplast’s elastic barrier strips to keep the edges more secure. Hope that helps!
May 28, 2016 at 11:10 amStephanie,
May 29, 2016 at 3:25 pmThanks for your input! I have tried Coloplast’s elastic barriers & they work great for when I exercise. And you are right about the brands. I use Nu Hope one piece pouches. I will give swimming a try!
Hi
May 28, 2016 at 2:50 pmI will repeat ……
Providing that you are otherwise fit & well, a stoma need not stop you doing whatever you want to do
I suffered 8 years of UC with all that that means
I have had a stoma for 42 years.
My mother has had a stoma since she was about 50. She is now 97 & still lives totally independently, doing her own shopping, cooking, cleaning etc & regularly travels to a nearby town on the bus
Compared to many disabilities a stoma is a minor problem
Like Susie, I was concerned about getting active again after 2011 ostomy surgery. I ran across the Stealth Belt website and gave their product a try. It worked well for me and I’ve been able to do all the things that I used to including several marathons and the 2012 Wisconsin IronMan competition which is a 2.4 mile swim, a 112 mile bike, and a 26.2 mile run. A long day for sure!…but I made it with no problems. Hope you get back in the water Susie!
May 28, 2016 at 3:00 pmChris
Chris,
May 29, 2016 at 3:29 pmThanks for your input! I have tried Ostomysecrets & wear their belts/sleeves under my clothes which makes me feel more comfortable knowing that my bag isn’t swinging around. I looked at the Stealth Belt site & will definitely try their products. I hope to get back in the water especially since my best friend has 4 kids & I love playing with them.
Susie
Hi Stephanie,
October 16, 2016 at 2:49 pmI’m really glad I found your blog! In August (2016) I had a diverticulitis flare up that my GI doctor was convinced I could get thru with enemas and suppositories instead of antibiotics. Well, that didn’t work and I wound up with emergency surgery due to a perforated bowel. The surgeon sent me home 3 days later with a purple/black stoma that went necrotic (well, was probably already necrotic in the hospital). Two days after that I had another emergency surgery at a (thankfully) different hospital with a wonderful surgeon who saved my life! I now have iliostomy (first surgery resulted in a colostomy) and a Wound Vac closing the surgical sites the Dr was afraid to close at surgery because they feared sepsis.
It’s been 2 months now and I’m starting back to work in 2 days.
I’m a bit paranoid about the bag leaking but feeling more confident every day.
Between reading your blog and the comments from your readers, I’m feeling part of an understanding, supportive community at just the time I need it!
Thank you all so much!
Phyllis
Phyllis,
October 17, 2016 at 8:35 pmI’m so glad you found the right surgeon for your second surgery. I’ve been there & done that with surgeries. My advice to you about worrying about leakage is to be prepared. Have a. Hangs of clothes & your extra supplies. I don’t go anywhere without my extra supplies. If you are really concerned about leakage make sure you have the right product. Most of the companies will send you samples to try.
Good to hear you are getting back to work!
Susie
So ….7 months after my Colon was stolen …. Thank God ! MY story Now aged 62 ! Born in Singapore my farther was in the airforce and I contracted Gastro enteritis at 18months old on the way back to the UK and put in a Isolation bubble in a hospital for infectious deceases … where I almost died …. down to the last 24 to live … and at 18 month I weighed less than my birth weight…. A doctor raced from London to the Yorkshire moors One injection and recover was rapid … all told to me later in years by my mother … and some of the family.
November 7, 2016 at 5:47 amSo Childhood. Normal rebellious child slightly naughty and always had a problem concentrating on things … Education was global as Dad was in the Airforce … but it was kind of fun …. and chunks missed at important times but I had bouts even as a kits of … some foods made me ill and some hyper …. thinking back.
Teenage years … I wanted to be a Pilot …but settled to train as a Chef … and still became a Pilot … I still had times when I had the screaming P”oos ! then at 19 had Asian flu … and thats when my life changed for the worse …. Pains, Diarrhoea which came and went till at 24 a trip to the doctors was required …. yep Crohns well it now has a name … some tables that had no effect and turned me yellow … and tests came and no action blood tests … and thats it … I, as a trained Chef & Dietician looked after the pain and suffering on a Daily basis with some remission when I found Alloviera and found after an elimination diet I know exactly what I could eat and drink and when and were …but always the lets just call it poo’s up to 15 to 25 times a day very mucous but ltttle or no blood … ..anyway I lived like that till 62 …and had the most fun you can have with your clothes on 🙂 then…
62 Disaster struck 9.5 of the pain scale … I had to make a trip to the GP .. followed by Yep MRI cameras Bloods CT and …. Cancer in the Colon ! mmmm well just go with the flow ..May 10th colon removed …
Living with no colon ..after recovery 6 weeks ish … and now 7 months I can eat anything … yes anything ! drink anything and feel 38 not 102 not bad for 62 🙂 I have my Pilots medical back I fly sail Just done my Power boat course and back to sailing my Yacht .. wit ha Colostomy Bag …But im alive and so well and … yep No Chemo …. so Lucky ! Bad bits…. There are none ! The bag works …. for me …. instead of the the Crohns and me being a slave to it …
Odd things ….some hearing loss in right ear … might be related. Hard small spots just under the skin that came and are just starting to go …. ish looks like measles spots but white but … disappearing
Diet here is the Rub….. I have put on 20 Lbs in weight across the shoulders so some kind of diet needed I already walk 3 miles a day dog walking + always vey active … calories 2000 + Red wine ….:) I know im bad 🙂
My daughter just had a colectomy yesterday. I want to be there for her as she recovers, but I’m kind of clueless as to what she’s going to need. Any thoughts?
February 2, 2017 at 10:24 amAngie, I’m so sorry your daughter is going through this. It’s a difficult thing to manage. I think one of the biggest things is just helping her stay positive. I have found that a good attitude makes the recover go a lot smoother. Just being there to encourage her will be a big help. You could maybe help her with getting cleaned up and “getting ready” whenever she’s up to it. Whenever I am in the hospital it’s such a good feeling once you can take a shower and do your hair. I hope this is a good thing in her life and can help her with whatever she’s been dealing with. If you have more questions, or if you or she ever want to chat, please feel free to email me. My email is on the contact page.
February 2, 2017 at 10:48 amHi there,
February 2, 2017 at 11:35 amI had colorectal cancer and now on recovery. We tried to save the colon with a resection and it worked for some time, but it’s been 2.5 years that I’ve been living in hell with this bowels and we just decided to have a colostomy done and be done with it, wanna get my life back, having a bag is like wearing eye glasses: it may be a pain from time to time, but it’s liveable, I’ve had it before, and it is kind of comfy to not to go the traditional way, if you know what I mean.
This time they are going to do a ostomy on the sigmoid colon, which means that I will try to use the rest up as s buffer and use irrigation, this way I only have to use a “lead” right on the ostomy and no bag; but if that doesn’t work, then I’ll just have a bag, no big deal.
When I had the bag (ileostomy) I was able to play squash, swim, use the hot tub, etc… you can do anything, these bags and all the accessories are incredible! and you get to try a lot, since the vendors will send you a lot of supplies to try on.
A problen may be the hair interlacing with the flange, I am a male with considerable amount of body hair on that area, so what I am doing in prep is getting it laser removed, so it won’t interlace with the fabric of the flange.
Anyways, Angie, and every one, feel free to ask questions in here, everybody’s comments are always so welcomed….
Cheers
T.
Tony,
February 2, 2017 at 12:04 pmYou are right, if you can accept wearing a bag, & you are otherwise fit & healthy, you can do anything you want. I have had mine for 42 years and am 70 years old.
Over the years I have swum, dived from a10m board, dived into the sea from a ship, climbed mountains ( an exaggeration as I have walked up a lot, but it sounds better )in several different countries, sledged with 3 children on top of me, cycled, played squash & played rugby for 17 years- touring St Louis & Montreal with my club, & playing my last ( ever I promise you ) game when I was 57.I have walked Long Distance footpaths in the North of England-31miles the longest day.
I’m not boasting ( well, a little bit ), but you really can do anything you want
Brag brag brag, I do it too…. feels so good, specially at our age, well, I’m only 51 years young…. I’m looking forward to go back to water skiing next summer. This summer I stopped because, the again, malfunctioning bowel prevents you from doing many things!!
February 2, 2017 at 3:08 pmScuba diving is also on the list. The continental crack in Iceland is next (crack dividing Europe from America) in my list to go scuba dive.
Cheers people…. live’s yours go take it!!!
Been living (sort of) with crohns disease for just over 5 years now. This Thursday I have an appointment where we pick a date for them to take my colon. Just wanted to thank you for your blog. Thank you thank you thank you I hope things continue to go well for you I’m hoping/praying for similar success in my venture. Once again thank you!
April 30, 2017 at 11:03 pmi have and ostomy for two years now i was talking to someone from this post ,,and i thaught things were better but im all mix up again, i was at the hoapital on sat, and they said i was perrty ful so came home and toke thre ducolex, and the next morning had a very good results i thaught all was fine, but the next day was all fliud so thaught i was empty. i had taken the two duclaxe ,and in the am lastlose. but im now cramping cant eat and wondering if im still consitpated, i deal with this every day of life. tonight im going to take two more tab, had some thick results in the late afternoon strange for me uasaly have outpuut in the earl am then nothing. confused can anyone tell me how can you tell if you have discomfor beccause you took to mush or not enought , so hard, thank you so much,.
May 23, 2017 at 6:50 pmGreat story, Brett @ Plumbbar@aol.com
October 1, 2017 at 10:04 pmThanks for posting this. I am reading with tears in my eyes. I am 38 year old who has suffered with sever colitis for 17 years. I had been ver successful on Remecade for 8 years reaching full remission at that time. But for the last 3 years my symptoms have come back and it’s a daily struggle. Everything you said he constant fatigue, worry, pain. I recently had a week hospital stay after an extreme flare up. I am meeting with a colorectal surgeon this week. I am totally fed up and need my life back. I have 2 small girls and want to be able to care for them. I have been scared of the idea of surgery and am trying to find stories of people who are happy with their decision. No more medication, pain etc sounds wonderful. I love what you said about the bar being low on quality of life .. I want/need more
October 3, 2017 at 8:47 amI suspect that dreams are somehow caused or influenced by micros in the colon while sleeping. Have your dreams changed some how after your colon removal? Do you still have dreams while at sleep?
October 26, 2017 at 12:28 pmWhat kind of daily diet do you people consume with your condition?
October 27, 2017 at 11:06 pmBalneol is my life saving product,wish I could purchase it wholesale,Brett
October 27, 2017 at 9:42 pmMy name is Frank and I am 90 years old. I have had three ostomies since 1993 when I had my last take down. I am in good health except for constipation. In June 2017, I had a gall bladder removed and now my colon is not working to well. I am constantly belching and dealing with constipation. Am I ready for fourth osteomy?
March 15, 2018 at 8:58 amReading your ‘About Me’ section is like reading my story. Just like you, I tried everything until one day I realised I was putting my life on hold by coping with my Crohn’s. I wasn’t going to be able to have children with all the medication I was on and as I’m just about to get married, this issue was becoming more and more of a priority.
April 2, 2018 at 8:17 amI had my surgery 5 weeks ago so I’m just getting ready to go back to work. Your site has really helped me understand the lack of limitations I have and hopefully very soon I’ll be able to appreciate how much better my life is going to be now. I’m already noticing vast improvements and working to come off my medication but I still have a little way to go before I’m used to ‘Bill’ as my mum named my stoma.
Thanks so much for sharing your story, it really is so helpful to those new to an Ostomy. xx
Thank you for sharing your story and expierience … For the past 7 months I’ve been looking into the way of living with a Stoma and positive and negative sideaffects. I’m writing an essay as a health student in switzerland an I have found a great pleasure in reading your detailed posts. Especially facinating was the part about having children with a ostomy, sexuality is one of the biggest topics patients are dealing after having surgery and for many it’s unpleasant or forbidden to talk about such intimet topics so it’s great to have people telling teir stories and helping others .
April 24, 2018 at 9:11 am