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I've had mild to moderate UC since 2007. I've been on high doses of prednisone, which was absolutely horrible. The side effects were worse than my UC symptoms.  I tried sulfasalazine. I eliminated gluten and dairy, which helped some. Then I switched to Lialda because it was easier to take (less pills to swallow, only once a day). Then I discovered the SCD (a grain, starch, sugar free diet) and had good success. I weaned off Lialda with no problems and I eventually achieved remission. But, it didn't last. Now I am trying LDN. So far not much improvement and side effects are I need to sleep 10 hours and I have a low appetite.
My symptoms are disabling me because I struggle daily with urge incontinence. Even when stool is formed I still have accidents. I would say that about 1/3 of BMs at home are accidents and about 2/3 of BMs in public are accidents. I have severe anxiety and avoid leaving the house and being around people for fear of embarrassment.
Soiling yourself is very demoralizing. I am suffering with depression because of the way my body limits me. I am so weary of living with these limitations and dietary restrictions, not to mention physical and emotional illness and pain.
I want an ileostomy. I do not want to try any other medications because I do not want to deal with side effects. 
I want my life back. I want to be able to go anywhere and do anything. Being able to eat whatever I want would also be nice after living gluten, grain, lactose, starch, and sugar free for a long time.
So here's my question: am I even a candidate for surgery? Or will I be forced to take medications first? And if I am a candidate, where should I start? Should I just find a surgeon online or go to one of my Drs? I'm afraid my Drs will make me try other treatments first, and there are very few that I am willing to try. 

Reply posted for krb926.

Hey guys I just signed up to this today. 26 year old male and got diagnosed with chron's when I was 24. Although it started out as very mild symptoms with preds (steroids) keeping things at calm. It was only a few months later it escalated severely..trying to Goto work and just dropping to my knees in agony and running to toilets 7-8 times a day on construction sites in a matter of 8 hour periods I had to give up work. My skin was grey I was all clammy was bed ridden. I tried imuran, remicade infusions (they would only put me into some kind of small remission for about 2 weeks max) back to hospital all the time for sodium and get fluids in me. But anyway on this story. It was only last November I had a procolectomy with an ileo. To anyone who is scared or worried about the surgery and are stuck in a situation I say go for it. It's a daunting experience at first. There's alot of thoughts , Anxiety and confusion running around. I believe surgery is something you should really push on with your specialists and ask them to meet with surgical team. Depending on how many treatments you have tried is another option I suppose but in my opinion I feel that the medications involved have way to many serious side effects and may not be nice in the future especially having to go have bloods tests once or twice every fortnight to keep track of bloods for chances of lymphoma and such. ( That was my largest worry). The operation itself I handled really well. I was out of hospital in 3 days afterwards. I got it of bed as soon as I could started walking getting my muscles moving and the stoma active ready to be healthy. This can be different for everyone. So anyway guys this is just a little bit of my story I'm not to experienced of it all but I learnt to adjust very quickly. If you have any questions or anything about the surgery in genral just ask :) hope to meet many nice members

Reply posted for krb926.

Hey guys I just signed up to this today. 26 year old male and got diagnosed with chron's when I was 24. Although it started out as very mild symptoms with preds (steroids) keeping things at calm. It was only a few months later it escalated severely..trying to Goto work and just dropping to my knees in agony and running to toilets 7-8 times a day on construction sites in a matter of 8 hour periods I had to give up work. My skin was grey I was all clammy was bed ridden. I tried imuran, remicade infusions (they would only put me into some kind of small remission for about 2 weeks max) back to hospital all the time for sodium and get fluids in me. But anyway on this story. It was only last November I had a procolectomy with an ileo. To anyone who is scared or worried about the surgery and are stuck in a situation I say go for it. It's a daunting experience at first. There's alot of thoughts , Anxiety and confusion running around. I believe surgery is something you should really push on with your specialists and ask them to meet with surgical team. Depending on how many treatments you have tried is another option I suppose but in my opinion I feel that the medications involved have way to many serious side effects and may not be nice in the future especially having to go have bloods tests once or twice every fortnight to keep track of bloods for chances of lymphoma and such. ( That was my largest worry). The operation itself I handled really well. I was out of hospital in 3 days afterwards. I got it of bed as soon as I could started talking getting my muscles moving and the stoma active ready to be healthy. This can be different for everyone. So anyway guys this is just a little bit of my story I'm not to experienced of it all but I learnt to adjust very quickly. If you have any questions or anything about the surgery in genral just ask :) hope to meet many nice members

Reply posted for krb926.

I met a guy this week who has UC and has an ostomy.

It sounds like he had his ostomy done on an emergency basis.  He mentioned something about being on a ventilator in the ICU for a while. 

He states that ostomies are not psychologically easy.  He was a very young man, he stood up out of his hospital bed with the ostomy attached, and the bag split off from his skin and went "splat!" on the ground.  The crap literally went everywhere.  In the room was a super-cute nurse.  He's never forgotten.

It sounds like you can have incontinence with an ostomy, it's just incontinence from a different place.

Can I ask what supplements you've tried to reduce your inflammation?  I've tried peppermint oil capsules (try one at a time for starters...they can feel intense), turmeric capsules, and hemp oil supplements, among others.  You *can* reduce, not eliminate, inflammation to a degree through what you put in your mouth.

I find bananas and brown rice are my friends.

What's your doctor been saying?

 Reply posted for krb926.

I had my first bout of UC when I was 15.  I went into remission in my 20s, but it came back with a vengeance when I hit 30.  I eventually had a Koch Pouch, which was the best thing I ever did.  I have all the control in the world and few complications.  I would imagine you would be a candidate for surgery if you UC is bad enough.  I'd suggest finding a good colorectal surgeon with experience in these surgeries.  You don't want a novice.  You can probably find one online or with a referral.  Gastroenterologists usually know good people.  Here is one thing I did discover.  I believe my remission in my 20s was due to my use of marijuana.  I stopped using it at 30 when I returned to college.  That's when my UC came back.  I did have a problem with periodic "pouchitis," a common inflammation that occurs after surgery.  It can usually be controlled with antibiotics (e.g., Cipro).  However, now that marijuana is legal in my state, I have used it regularly before bed each night, and I have not had a single bout of pouchitis in three years!  You may want to explore the benefits of medical marijuana.  I will warn you that most doctors are pretty conservative in recommending it, so don't look for support from them.  As a patient, however, I can tell you it works for me!