How long do you put up with a stricture

[Jao]

Hi all, I do not create many posts i usually get the information i am looking for from others on here. But I have some questions and i hoping to get some help here. I have crohns for 17 years now i have tried all medications available some did not work and others i was allergic to such as Humira remicade and cimizia. I have had 4 bowel resections the last two because of a stricture. My last resections was 2 years ago. Now that i have my brief history out of the way down to the problem. I recently has a colon scope and GI thought i had a stricture again. He said he saw inflammation at the end of my small bowel and he referred to is at very congested and saw many ulcers. I had a small bowel series done and it confirmed the stricture/narrowing. My previous strictures i have to admit I did not try to put up with them for as long as i should have. I don't think i gave it enough time to try and heal. My GI thinks its a combination of scar tissue and inflammation. he is going to start my on a new drug that has come out called entivio. My questions is how long should I put up with it. I believe i have ad the stricture for almost 2 years now i believe i got it shortly after the last on was removed there just was no medication for me to take at the time other than prednisone and i had already been on it for over 8 months so i did not want to start prednisone again so soon. Lately my pain is getting worse i keep getting these sharp pains all over my stomach. I severely bloat to the point that i can not even crunch my stomach because it feel like it will burst. Sometime my stomach get very hard. I am getting the intense pressure and pain in the exact spot they found the stricture. I get nauseous but have not thrown up yet. I have made myself throw up because things were just stuck inside of me and causing so much pain and discomfort. For many years now my system has run very fast i eat then i go to the restroom immediately i have to eat a lot throughout the day in order maintain weight and have any energy and always have diarrhea. Now when i eat i get very full i bloat and i get the pain i had just described. I can go 24 to 48 hrs without using the restroom and i just can feel the stuff inside ob my intestines trying to get out. Thats when i start getting the feeling of serious pressure. As long as i am able to pass stool and maintain my weight should i keep fighting the battle? I am so used to dealing with pain and the symptoms of crohns that it is normal to me now. Sometimes i don't even realize i am in pain or discomfort until i pass some stool and i have relief ( if that make any type of sense). I don't want to have to have emergency surgery if i need surgery i would like to have it planned out. I don't want to have my bowel rupture or perforate. Am i fighting a battle that i can not win and just going to cause more damage. Or as long as i have can pass stool and not vomiting despite the pain and discomfort should i just tough it out. I have

 

[nogutsnoglory]

It's a risk vs benefit analysis but you can try to put it off with this new med and a low fiber diet. If you still don't respond and the stricture doesn't widen it's probably best to remove it so you can plan the surgery and live more confortably.

 

[Daisy123]

It is a difficult one. I have strictures, no vomiting but severe pain, bloating and overflow diarrhoea. I am on low residue diet but exhausted. I had my last resection 3 years ago, so,not keen on more and already have adhesions as a result off surgery. If I were you, I would go low residue and try the drug. Strictures need to recur, or least do in my case.

 

[Justanothercp]

Jao,
That is such a tough question. I battled for a few years, but my quality of life suffered, my job suffered, my marriage suffered, my health suffered. Finally, just decided I didn't want to live like that anymore. My resection was the best decision, it gave me a life back. I wish I would have done it sooner. I know the odds are I will need to have another one at some point. Major surgery isn't something to take lightly, but neither is your happiness and quality of life. Unless it gets life threatening, I think you are the only one who can decide when enough is enough. It is tough, I kept battling, thinking I can beat this thing or make it better, but sometimes you just have to bite the bullet.

 

[Jao]

Jao,
That is such a tough question. I battled for a few years, but my quality of life suffered, my job suffered, my marriage suffered, my health suffered. Finally, just decided I didn't want to live like that anymore. My resection was the best decision, it gave me a life back. I wish I would have done it sooner. I know the odds are I will need to have another one at some point. Major surgery isn't something to take lightly, but neither is your happiness and quality of life. Unless it gets life threatening, I think you are the only one who can decide when enough is enough. It is tough, I kept battling, thinking I can beat this thing or make it better, but sometimes you just have to bite the bullet.

Yes it is mentally straining. Sometimes I feel like I just have a time bomb in my stomach. I'm at the point in my life where I can't slow down. I can't just stop and be sick. The disease has ruined so much for me already why waste time fighting a battle you can't win. If there's a chance medicine will help it that's different. But my doctor said some of it is from scare tissue so it will never be same again. Bouncing back from surgery is not a problem if you find the right surgeon. There's always the chance of an colostomy bag, which would suck. I don't know It's just frustrating I'll tell you that. Sometimes just feels better to vent. The people around me don't understand so it's nice stopping in and getting done advice.

 

[valleysangel92]

There is no write or wrong here, the decision to have surgery is always a very personal one.

For me, I'd been suffering undiagnosed for almost 5 years. By the time we knew what we were dealing with, I had a lot of scar tissue. So I had steroids to try and reduce the inflammation I had and then after a few obstructions it was decided I needed surgery. I had my resection just 6 months after diagnosis after being on the waiting list nearly 3 months. For me it was a no brainer. I'd had 5 hospitalisations from October to February , couldn't eat, was in constant pain, was dramatically loosing weight and we knew it was scar tissue that caused my stricture, so we knew that no medications would of helped, I knew I'd have to have the surgery eventually and with my history of blockages it was better to have the surgery planned than end up as an emergency . The steroids merely ensured that the active inflammation was kept at bay to allow reconnection.

If you know that at least some of the stricture is scar tissue then surgery is the only thing that will get rid of it. However if some or most of it is active inflammation then it's definitely worth allowing the medications a chance to work and see how much they can improve things for you. You could maybe set up a timeframe with your doctor, set a time in your head that you feel is realistic and fair and if you don't see a reasonable improvement in that time then you can review the situation.

 

[alex_chris]

I only had surgery once removing three strictures that have likely been there for 2-3 years. Things back then didn't get better and I was having a bad time, hence the surgery. Also I was underweight and could not increase my weight.

 

[Juuh]

I was hanging in there with two strictures in colon for couple of years. Lots of discomfort and pain, stayed on low-residue diet and I kind of got used to it. I was not vomiting (only occasionally, few times) and I could keep on living almost normally, active in school and sports.

Then at some point surgeon told me maybe its best to get over with it and go for surgery. I was feeling getting worse so I decided to go for it. It was good decision for me as it turned out ok! This was in 2005. Now I have some narrowing in colon again but no symptoms as long as I don't do eat wrong stuff...