Community Forum

I was diagnosed with ulcerative colitis in 2004 and have tried nearly everything: asacol, pentasa, rowasa enemas, imuran, prednisone, remicade, antibiotics, and all sorts of diets, supplements and alternative therapies.  The only thing that can get me into remission is prednisone, but everytime i come off of prednisone i'm back in a flare within a couple months.  This is my third time on prednisone in the past year and I'm usually in the hospital with bad flares 3-4 times a year.  I've been on remicade for about 3.5 months and I'm also on prednisone (which i started in the hospital a couple weeks ago), asacol, iron, and just finished a round of antibiotics.  My doctor said he wants to give the remicade another few months to see if it starts working and then maybe double the dose of remicade..  He said if that doesn't work then I'd probably have to have a colectomy.  I'd never wanted surgery in the past, but now it's starting to sound really appealing.  The idea of not having to take all of these drugs for the rest of my life and not being bound to a hospital for infusions or flares every couple months sounds pretty great to me right about now.  Also, I've taken off the next few months from work in order to focus on my health and will be starting graduate school in the fall.  So now is kind of a great time to do the surgery.  So my question is:  are there any reasons NOT to have the surgery?  Have any of you experienced side effects or complications from the surgery that were worse than having to live with uncontrollable ulcerative colitis?  Also, have any of you had to ultimately get an external pouch due to complications and do you know how common that is?  And finally, any idea about any negative long-term effects of the surgery (20-40 years later?)  Thanks to anyone that has info or advice

 Reply posted for daniel3320.

I cannot answer your questions, but have read your story and found it comforting to know we are in similar situations.  I am currently on a medical leave of absence from school and lost my job due to my illness.  I have tried all of the treatments as well, including prednisone for 13 straight months.  I am scheduled for a proctocolectomy in 2 weeks.  I have to get it done now because I start school again in the Fall and cannot afford to get sick again.  I say go for it.  It is a major, life altering surgery, but as you said....life without being ill and medication is very appealing.  Anyway, I wish you luck in making your decision.  Check back with me in about three weeks and I can tell you all about the surgery;)

 Reply posted for KerikAZ.

hey keri, about your Ileostomy do you still have a colon ? and is your stoma above or below your beltline and do you wear your bag in your jeans or above and over?  I'm very slim 5'11"  130 lbs and if there is one thing I miss it's tucking in a shirt. What kind of appliance do you use, wafer and drainable pouch or something else and do you have any skin issue's around your stoma ?      Daniel

 Reply posted for fuzzy.

P.S. I should've mentioned that C3Life is a safe & well established website. It is associated with the United Ostomy Association of America.

 Reply posted for anijordan.

Hi...I am a member of C3Life, a forum for people with ostomies. Due to a rare eye cancer diagnosis, I was forced to stop drug treatments (6-MP, Remicade) for severe Crohn's Disease (diagnosed in '84) which led to ileostomy surgery. There are many pro's & con's to this surgery (for UC, it does mean a cure!). I definitely suggest that you check out the above mentioned website if you are considering this route. Trust me, you will get honest feedback!!!...fuzzy

 Reply posted for anijordan.

I had a colectomy this past March, and, although surgery is never the ideal situation, I have absolutely no regrets.  I really didn't have a choice, the surgery basically saved my life.  However, you can imagine as a 23 year old female, the thought of having a pouch was "the end of the world."  It wasn't. 

I was so upset when I first learned I had to have it (and I only had about 18 hours b/t then and the surgery).  I felt like a freak at first, but I recovered from surgery quickly, got back to school, work, and friends.  Everyone treated me exactly the same, and it wasn't long before I started feeling exactly the same.  I lead exactly the same lifestyle as I did before surgery, and you really can't even tell I have a pouch.  I have two more surgeries for them to construct my j pouch and hook me back up by Christmas.  I'm so excited, but in the mean time I'm feeling healthy and happy and 1000 x's better for having had the surgery. 

Best of luck to you!

 Reply posted for anijordan.

hey , iam two years post surgery w/ a j pouch. It consisted of 2 surgeries on e8 hrs long where they removed my large intestine made the j poch and attached a temp iliostomy bag wlth very minimal scaring just a bikini cut a few small incisions near the belly button where they removed some laporscopically(?sp) and now a scar where the stoma was.Andd the second 4 mths later to take the bag down,there was a few complications and i still have to watch somewhat what i eat but it was the best choice for me at the time and i have no regrets. I also agree with Jeff great surgeons, nurses ,friends and family and the will make all the difference. And i believe someone else had suggested probiotics which was also suggested for me i use VSL#3 which can be purchased online just google VSL#3. hope this helps  TPiemo

 Reply posted for anijordan.

I had a complete colectomy 4 years ago when I was 21 years old after my colon perforated when I had a flare up.  Underwent two more surgeries after the original to create a J-Pouch and reattach my small intestine.  I've had to adapt my lifestyle somewhat to the fact that I don't have a colon, but it doesn't keep me from doing things I want to do.  The biggest thing I've had to make sure of is that I stay well hydrated, especially as an athlete.  I've run a marathon and plan to do more.  I continue to do half-marathon races and triathlons.  I just hydrate very well, even beginning days before a long race, and stay aware of how my body feels during a race. 

Other than that, I live a pretty normal life and love coming up with reasons as to why I have an 8 inch scar and ostomy scar on my stomach ("It's a really bad paper cut" is my favorite).

 Reply posted for mrsriff.

Hi I had four surgeries about 5 years ago to have my colon removed and now have a J-Pouch.  My recovery was slow and I had several complications such as kidney failure.  Since then, my kidney resumed working enough so that I don't have to go dialysis anymore and I was taken off the Kidney Transplant list.  After going through the surgeries, I lost 75+ pounds but has since gained it all back and more (I'm now obese).  I also have to take pain pills to alleviate the pain I sometimes get after using the bathroom.  How do you know if you have pouchitis?  What symtoms did you experience?  Thanks.

 Reply posted for anijordan.

I had my colectomy 15 years ago. I didn't really have to make a 'decision' about surgery, it was an emergency. I was in the hospital almost 3 months with a severe flare with no sign of remission. So, surgery was not an option for me. I will say, however, it was the best thing that could have happened. I live a completely normal, healthy life. Since surgery, I graduated from college, got married and had children. I work a full time career, travel, coach soccer and am on every school committee you can imagine. Nobody knows that I was every sick or that I have a 'condition'. I feel great and there is nothing I cannot do. The only complication I have had is in the last year, I have had a few cases of pouchitis, which is an inflamation of the pouch. It is easily cleared up with 2 weeks on antibiotics and is managed by taking probiotics, which are an over the counter supplement, not a prescription with side effects. The chances of having pouchitis flares increases over time, so I guess I was lucky to go 14 years with no problems at all. Some people never have any problems. I would highly recomment visiting www.j-pouch.org. The people on that site have been invaluable to me and I have learned more from them than any doctor. Good luck!

Potential Colectomy

Part 3 of my story:
The three months went by with a few glitches, but all in

all, I felt so good. I was healthy again, eating again and so excited to be

capturing life back. It was time for the major 4-5 hour surgery now to put me back

together and I couldn’t wait.  My

recovery time afterward was only about 2-3 weeks and once my scar healed, life

was bumping again. And just for the record, it’s a HUGE scar, but a victory

wound well worth it. Through the use of Lomotil (which is a drug that I take

before eating to help slow down digestion and in effect prolong my bowl

movement), learning what foods agree with your new setup the best, and

understanding that you may have to plan your eating more than the “normal”

person does, you’re going to live a great, healthy life after having this

surgery. I’m basically moving my bowls 3-5 times a day, which ain’t so bad,

because like I said, I’m healthy and not taking any meds except for Lomotil. I

work an office job, play hard pitch baseball in a mens 18+ league, sexual

functions are well, I go to the gym, and do almost anything that anyone else

can do. People who don’t know of my past colitis bout would never guess that I

was so sick. Sometimes it’s a pain having to go to the bathroom so often, but

hey, life’s not always perfect. Just learn to listen to your body and keep your

head up. Also, go out and buy the book The Secret…it will remind you to be

thankful for your life and especially your recaptured health!
 

 Reply posted for miked3399.

Part 2 of my story:
Step one was taking my colon out and getting the ileostomy. My body was so depleted and ill that I had to live with "the bag" for 3 months, get healthy again, and then have my insides put back together again and turn a portion of my small intestines into a makeshift colon.  So the first surgery, the ileostomy, was really scary. I’m not going to lie, living with the bag is not fun. It definitely hinders your life and it’s a pretty significant handicap. I couldn’t imagine living with the bag for longer than those 3 months. For me, the bag was simply a means to the end, a necessary evil.

 Reply posted for anijordan.

Part 1 of my story:

So here's the deal...In 2000 I was a sophomore at URI. The summer before going back I started to get stomach pains, constant diarrhea, and all those other wonderful symptoms of colitis. Anyway, through that summer I started an ever-changing regimen of all the common treatment drugs, began to drop weight by the day, barley had an appetite, but still wanted to head back to school and party it up like nothing was wrong. I was so damn weak though that I barley made it 2 weeks on campus before health services sent me home and directly to the hospital. I was laid up there for a month straight and finally got to go home, basically just delaying the inevitable - surgery!! Now, here's the main difference between my decision for surgery and most other colitis patients: I had only battled the disease for a half a year and it was so bad that surgery was really my only shot at ever getting better. Whereas most others struggle back and forth with flair ups for years. So I wasn't even scared at the notion of surgery, I just wanted my life back.

 Reply posted for KristinK.

Regarding having an Ileostomy, what about noise. I have read that noise could be a problem. I am having to make a decision about surgery in the next few days. I've had UC for about ten years with major flare-ups the last two. Prednisone is slowly destroying my body and I've had enough of the drugs. I want my life back.

 Reply posted for KristinK.

My question is what made you go from a J-pouch to a total ileostomy?   

 Reply posted for anijordan.

My husband has tried everything except Remicade and steroids. He has been on Humira for the past year for UC. He felt immediate relief with the first loading dose of Humira. At the beginning point of this treatment he was only given the options of Remicade, steroids and surgery. We chose a clinical trial of Humira. We will never regret that decision yet it has its costs. His immune system is so suppressed that as an otherwise healthy person (except for severe UC) he has never gotten sick, but now catches everything. A year after treatment began we are now facing the worst flare you could ever imagine with the real possibility of stopping treatment within the next couple of weeks because it is now failing. So once again we only have the options of Remicade, steroids and surgery. Not wanting to continue or prolong the inevitable we are seriously considering surgery just to get some relief finally. Hard decision, we have heard good and bad surgery stories and are not as versed in the procedures as we hope to become to make an educated decision. Any input on the recommended treatment options would be great.  I still recommend Humira (when approved for UC) because until now it gave him quality of life, albeit for a short period, I have hopes that it can be successful for others. I continue to hope that will be light at the end of the tunnel in this struggle to to return to a better quality of life for all of our loved ones that fight in the battle against UC. 

 Reply posted for anijordan.

I had my first partial colectomy in 1995 and things were great for several years.  I was very glad I had the surgery.  Unfortunately, statistics say that once you've had the surgery once, you have a 50% chance of having to have it again, then a 75% chance of having it a 3rd time.  My second time came in 2007.  I had been flaring again for the past year and it all went crazy in 2/07.  A 2 hour surgery turned into 8, with a resulting Colostomy and 3 month hosp stay.  2 months later, I had an MRSA infection, more surgery and a 2 month hosp stay.  2 weeks later I had a small bowel perforation, more surgery, reversed Colostomy, new Ileostomy and a 3 month hosp stay.  I know this is not the norm for second surgeries, I just had lots of complications.  Bottom line is, as of today I am healthy and dealing well with my Ileostomy.  No one knows I have it unless I tell them.  I never thought I'd wear pants again after it was first done, now I'm back into jeans (woohoo).

I don't know if I'd wait to have the surgery, I remember my flare ups and I was so sick I lost lost of work days, ending in job terminations.  The pain is not worth it and you run the risk of a perforation or complete blockage.

Whatever you decide, good luck to you.  There are lots of support groups out there as others have mentioned and lots of information.  We all support each other every day.

Keri

 Reply posted for anijordan.

 Reply posted for jeffbazell.

Hey Jeff,

Thanks so much for your response.  It's funny, all of the patients that I've talked to that have undergone a colectomy have said to go for it and that life's much better afterward, with a j-pouch or a bag.  But my two GIs have both told me to try to hold out for the two years of grad school and see if remicade magically starts to work or hope that humira is FDA approved for colitis soon and then see if that will work.  If neither remicade nor humira work in the two years of school they suggested getting myself through the remaining time of grad school on prednisone and then having the surgery when i graduate.  We decided to choose the "get me through grad school" route and hope that something changes, either in available therapies or the reaction of my disease, in that time.  If not, I'll be looking to do the big cut in summer 2010.  Luckily that means I'll have plenty of time to talk to people, research and prepare myself--rather than the rush job I thought I was headed for next month.  Thanks again for your response.

 Reply posted for KristinK.

 Hey Kristin,

I would love to contact you directly to find out more about your experience.  I'm specifically interested in how common it is for people to start off with a j-pouch and then move to a permanent ileostomy, or at least why you chose (or had to) do that.  Call me vain, but I would really like to avoid a permanent ileostomy if at all possible.  Also, I'm curious about difficulty with becoming pregnant after a colectomy as I would really like to be able to have kids in the next 5-10 years and I've read that it can be an issue.  Not sure how to contact you directly, but my e-mail is jordash911@aol.com and you're welcome to contact me directly and send me your info instead of positing it on the discussion board if you'd prefer.  Thanks so much for your response!

p.s.  I'm posting this again, because I think it got put up in the wrong section the first time--sorry if it's a duplicate!

 Reply posted for anijordan.

 I had a colectomy 16 years ago at age 15 for UC (which actually turned out to be Crohn's.) I've had a jpouch and now have a permanent ileostomy.  I'm happy to answer any questions you have.

Other good resources include:

www.uoaa.org for info on having an ostomy

www.j-pouch.org for info on jpouches

Best of luck on your journey!

 Reply posted for anijordan.

 My story is almost identical to yours so I won't go into detail.  I had a total colectomy in Feb. 1998.  First the j-pouch.  Unsuccessful.  I now have an external pouch and I must say it's a thousand times better than living with UC or the pain of the failed j-pouch.  I look at it as a friend, with a sense of humor (you have to laugh about life's obstacles), as a cure for UC and a 100% colon-cancer preventive measure.

I was also lucky with the surgeon, the ostomy nurses and, of course, family and support groups.  It's not as bad as I anticipated.  The surgery was easy, recuperation fast, minimal pain, as long as the pain is well managed by your doctors, and your determination to heal is strong. 

Don't waste time worrying about whether or not to have the surgery.  Discuss it as much as possible with the surgeon, get all questions answered and read personal stories as often as you can.  Life is good again.