Internal Sphincter Ulcer. When to get an ostomy??

[enumeras]

I've had Crohn's Colitis for the past 12 years and had a subtotal colectomy ileo-rectal anatamosis 5 years ago. I have been in remission and haven't seen ANY blood in my stool until July this year. I rushed to the ER and my GI was waiting for me. The sigmoidoscopy showed that I had perianal crohn's. I've had fissures and abscesses before but I honestly didn't feel any pain around this time, which made me not worry so much after the blood subsided a few days later. However, at the beginning of last month, I started feeling immense pain (both during BM and just standing) and had another sigmoidoscopy done by a surgeon. He found that I had a very deep 4cm anal ulcer. I remember coming out of day surgery with him telling me that he suggests a temporary ileostomy since I'm so young (26 yrs old) and allow it to heal. I don't know what to do. I am so scared because I thought I was done with Crohn's after my last surgery 5 yrs ago and honestly, just looking at stomas makes me queezy. I can't imagine ever having one. I was literally in shock after my surgeon told me about his assessment. I don't have a visual how bad it looks but he said that my main ulcer is extremely deep and eating away at my internal sphincter.

I don't want to do any more damage. I've been doing sitz baths, taking 30 mg of prednisone, 100mg of imuran, 9mg of budesonide, 1200mg fish oil, Cucurmin x4000, 500mg L-Glutamine, probiotics, 6 Rainbow Light Advanced Nutritional System supplements, and Lidocaine/Diltiazim ointment.

I'm trying to do whatever I can to stop this. It's making my life hell and I don't know what to do. My GI is wanting to put me on Cimzia and now I'm stuck playing the waiting game. I don't know how aggressive my Crohn's is eating away at my internal sphincter. And I sure as hell would NEVER wish to have a PERMANENT ostomy. It just seems like it's impossible to heal this ulcer unless i get a temporary ostomy (or at least that's how my surgeon made it sound). How do I know when to give in and say, "okay, i'll deal with it temporarily because if I don't, it'll be too late and I'll have to go permanent"?

 

[Grumbletum]

:welcome: Hey there and a very warm welcome to the forum. I'm so glad you found us, but so sorry because you are having issues with the ulcer. It sounds awful.
I am wondering if it might be worth discussing with your GI a period of TPN to give your bowel some rest in order to allow things to heal? It's also quite a drastric treatment, but possibly less frightening than the temporary stoma. The GI however, will be able to advise better that me if it's a feasible option in your situation. When is your next appointment?

 

[Aussie]

Hi enumeras, a few things, why are you on budesonide and pred? Also, unless you have a lot of intestinal inflammation, you might be better off the steroid (which actually impairs mucosal healing), Enteral nutrition would be a lot better in that you would actually be inducing remission and also contributing towards mucosal healing. I think biologic therapy would be a really good idea in this situation, however, I wouldn't rush into defunctioning surgery unless you are failing medical therapy. The other treatment that has worked well in severe perianal/rectal Crohn's (although not helpful in perianal fistula) was topical tacrolimus, either suppository and enema.

Good luck.

 

[enumeras]

First and foremost, thank you both for your replies and insight. I have been a lurker around Crohn's and Colitis forums since I was diagnosed but this is the first time I've actually gotten the courage to sign up and post. Since I haven't been too worried about my Crohn's for the past 5 yrs, I'm not up to date on understanding all the possible therapies like TPN so thank you for bringing that to my attention. I will definitely bring this up to my GI as a possibility and ask him his thoughts. I am on budesonide and pred because it was noted during my sigmoidoscopy that I had moderate inflammation around my anastamosis which needed to be addressed hastily. I am currently tapering down from the pred. I will be down to 20mg by Monday and I just got approval from my insurance this morning for Cimzia. I haven't heard of topical tacrolimus either so I will keep that as an option. My next appt is 12/31/12 with my old trusting GI back home in NY. I moved down to Austin a few years ago so I honestly don't have a good rapport with my current GI or surgeon. The fact that they both immediately suggested something like surgery was quite alarming and bewildering to me.

 

[jackie13]

Hi, sorry you are suffering with this, my daughter has had the same problems for many years, she has had 3 bowel resections and in 2011 had the temporary colostomy at her surgeons request. this was to 'let the bowel heal' well after a year she was no better and hated the ostomy. I am sure many many people live very well with this procedure but she hated every minute of it. She is 34 and nothing healed in the year, in fact her abscess got worse, she was told that the only alternative was to have her rectum removed perminantly. She refused this and had the ostomy reversed back after a year. she is still having major problems with pain in the rectum when having a bowel movement and we are actively looking for alternative treatments but as of yet nothing has come to light. look into every alternative treatment before you decide, for a young woman this is not always the best option.

 

[enumeras]

Holy smokes jackie! Yeah, I wonder how I can get this healed. I've gone through 3 huge perianal abscesses, 2 healed through sitting in a warm bathtub while I had to go to the ER and be admitted the other. Luckily it burst in the hospital the night before going under the knife to get it drained. I will call my GI tomorrow and ask his opinion on how likely these ulcers heal on their own without any temporary ostomy. I'm very sorry to hear about your daughter. I had no idea that something like this could even happen.

 

[smallfry]

Hi there enumeras,
Sorry to hear of your troubles. I have perianal crohn's disease as well. I just recently decided to go for the temporary loop ileostomy to help rest the area and I must say I am pleased. I know everyone is different but I have taken quite well to my stoma Angus the Anus It really is nice to give the bottom a rest. Dealing with the abscessing and tracts since 2006 and I had had enough of the pain. I still have discomfort but it is great not to have extra pain from bowel movements. It takes time for things to calm down, I am trying to be patient since I am still swollen/abscessing but like I say - glad to not be aggravating them with poop! I am happy with my decision and after all it is only temporary.
All the best!

 

[smallfry]

I would like to add that I do have wonderful support at home that has made my transition a much easier road. I live with an angel with the heart of gold. I love him with all my heart!