Is an ostomy a good idea

[corker77]

:sign0085: I am seriously considering an ostomy because I have a fistula in my anus. I have this as far under control as I can...and it's wicked! I have had it for years, and it only gets worse. I also just had a colectomy this April, and really haven't found any relief from my bathroom habits-I still have accidents and the constant urge to go-which further creates a problem with my fistula. I am overweight, and have been most my life with the exception of being sick with crohn's previous to my diagnosis, and 3 to 4 years after...than there was prednisone. Years and years of it and increasing doses, along with genetics. My question is not based on vanity at all at this point, but I'm wondering how I will manage a stoma with all the rolls and creases on my abdomen, that are a problem on a regular day if it's hot & sweaty-I know my doctors, nurses will place it considering all of this, but I am wondering how "messy" and what disadvantages there are from the beginning being overweight. And also, will I gain more most likely after my stoma (able to eat more foods comfortably), or is there a pattern of general weight loss due to the nature of things after surgery. I realize that no one is psychic, and I am a heavy crohn's patient despite ALL the pooping and discomforts, but I just wondered if there is a "typical"-and I use the word loosely-set of post surgery effects on this matter, as I do not know anyone personally with crohn's to even ask. I hope maybe I could just get some instances from different people who may have or know some one with this issue. I also hope This is posted in the right place, and not too long-I'm new here, but I felt there was need for some explanation to my question. Thanks
By the way-it's not like I have an option about surgery if I want to get on in my life, just trying to learn and make the best of the situation(s).

 

[Jer's Girl]

Hi Corker77. Welcome to the forum!

I am so sorry for all you have gone through. I have had my share of fistulas, and I know how painful they can be.

I have heard that it is harder for people who are overweight who have stoma's for the exact reasons you mentioned.

When I had my stoma, I did gain weight because I was A) healthy enough to eat and I love food, and B) because my body was finally able to absorb nutrients. However, that is only my experience. It doesn't have to be yours.

What are your Dr's saying? Is a stoma your only option at this point? I don't want to discourage you, at all. I just want you to be sure that this is the best option for you.

That being said, having my illeostomy surgery was the best decision I ever made. Not only did I feel great when I had my stoma, but it may have even gotten me to a place now where I might actually be going into a remission for the first time.

I hope that others can give you some advice on here. Sorry I couldn't be more help. I hope that you find the answers that you need to make an informed decision. Believe me, I know how hard it is to find answers concerning ostomys. There is so little information out there on the topic for some reason!

 

[corker77]

Thank you so much for the advice and acknowledgement! My first option would obviously be to lose weight...but like I said that has been a lifelong struggle, and I'm always trying. I have an appointment with my surgeon to discuss my options in early November, but I have been told bypassing my fistula is really the only chance of it possibly healing. I have had two surgeries for this alone and have had two setons, eventually the second seton was removed. I believe I am developing another fistula in close range to the first and am in extreme pain constantly. I have rarely been off Cipro and Flagyl for more than a two month period(not good for me either) I have tried all treatments and none are successful, yet I just realized I should give Humira another shot (pun intended). It did not work for my abdominal issues before my colectomy, but maybe it will help my fistula having it be the main focus for treatment this time. Crazy how one ponders or stews for lack of a better term-all my days, than types a response and comes up with a "simple" idea that has been in front of me the whole time! Cheers to new hope!! Thanks again Jer's Girl!!!!

 

[CDDad]

Hi Corker,
So you must currently have a J-Pouch? I can't offer advice on being heavy with an ostomy, but here is a video I found a while back of a heavy girl changing her pouch.
http://www.youtube.com/watch?v=ANrycspfQQw

I had a fistula or two and they caused abcesses so I know the pain. I tried a seton, but that was not fun at all. That was just one of my problems so finally just had it all removed - colon, rectun, and anus. Been great for me so far. I'm symptom free and feeling great. Best thing of all is no urge to go anymore!

 

[Jer's Girl]

Thanks for posting that video CDDad. It might of been the way her weight was distributed, but the extra weight didn't seem to cause her any problems at all. Hope that helps Corker!

 

[corker77]

Actually, CDDad and anybody else who is interested, I have had a total colectomy and they connected my ilieum to my rectum, called a colectomy with ileorectal anastomosis. Thanks so much for the link!

 

[Sue-2009]

Corcker...I'm so so sorry to hear you are still suffering...I too have a j pouch, because I had uncontrollable colitis, and now I have crohns I am in Michigan too! I will be following your posts...Its so hard to deal with this darn crohns...Know that your not alone. I always lurk here in the stoma posts because, I want to be prepared....But, I don't think we can be prepared completely....Good luck...S

 

[corker77]

Thanks Sue-2009 I still have a lot to fill out about my profile, so when I find more time I will be interested to see what else I may have in common with you, amongst other members! It's such a relief to be able to relate to others about something so undeservedly taboo!

 

[hopeful]

Have you looked into hyperbaric oxygen therapy? There are a couple of very successful studies published about its efficacy in resolving perianal fistulas. And it is widely available, even if your GI doesn't know of it. Best thing, little to lose other than time.

 

[corker77]

Thanks hopeful-i have not heard of this. It is definitely worth my time to look in to it!

 

[hopeful]

This is the link to one of the first studies (done in Israel). But there are a few other reports too in the medical literature.

Go to Pubmed.org and put in 7806829 and the article will show