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Surgery for stricture not fully convinced

I saw a surgeon at my dr's request due to a stricture in the small intestine close to the ileocoecal valve. I have been on pentasa and prednisone since mid June and Entocort since the end of August. I am not fully convinced that I need surgery. My dr. feels that the inflammation has been taken care of therefore I do not have the severe pain I had before taking all the meds yet I still have a "fixed stricture". I have asked both the surgeon and my dr. about the biologics and immunomodulators. Surgeon says he would consult with my dr. He did and my dr. still feels like the biologics/ immunomodulators would not do me any good. I also asked about balloon dilation and my dr. said he would not attempt it b/c of danger of bowel perforation yet I've read on this forum of other people having it done. Surgeon said he would have to take the cecum and the ileocoecal valve as well as diseased part of small intestine but this is a big issue for me. No one can guarantee that I won't have diahrea worse than what I'm having now. They have not done another small bowel follow through since I have been on all this medicine but I am having the diahrea symptoms now that I'm only on 5 mg of pred and I can feel a dull ache in my right quadrant; not painful but I can feel like something is there. I am having trouble believing that I need surgery. Any advice or suggestions would be appreciated as I cannot make the decision to have surgery as I am not as bad off as I was before the meds I am currently taking. Thanks.
Hi Vonnie,

I'm sorry you're having to go through the hard decision of whether or not to have surgery. It's not a decision I've had to make but I'm sure there are others here who have been in your situation who will chime in. I guess depending on how sympomatic your stricture is and whether it's causing any significant obstruction will dictate whether it needs removing. I think if you have doubts about the surgery I'd be asking for a second opinion from a different GI.

I wanted to ask, did you discuss with your surgeon whether a strictureplasty might be possible instead of a resection? The stricture gets opened up without you losing any of your bowel, so it shouldn't result in D because the ileocoecal valve isn't removed.

I did ask the surgeon and my dr about a strictureplasty and they told me that the stricture was too close to the icv from what I understood. Maybe I do need a second opinion. The diarhea is dictating how much I eat and it definitely is interfering with my work which is what was happening before. I haven't lost too much weight again but I see the same scenario as what I had before all the meds. Thanks.
Hi Vonnie,i am in exactly the same position almost as yourself,i have a stricture at terminal ilieum,i have been on Infliximab (remicade) but as they say it does not do anything for a stricture,i asked my Gastro last time i seen him if Balloon Dialation was possible,he was very hesitant,saying i could end up in theatre with a perforation,and it may only last a couple of weeks,if and only if they can get through the terminal ileium,and that if it was like a pin hole,they would not attempt,So i am in the process of starting my prep tomorrow for colonoscopy on Tuesday afternoon at 3.10pm
I am really nervous,has not had colonoscopy for years and years,had MRI,S (Last 7 months ago) and Barium Meal,etc.
Well we will see what happens Tuesday,if not i am pretty sure it will again be another bowel resection again,this being my 4th,well no 3 bowels resection and 1 strictureplasty,to be honest,i had as much pain afterwards with a strictureplasty,as with a bowel resection,only thing is no bowel is taken.
Oh how i hate this god dam disease.
Trish x
Trish22, I hope your colonoscopy goes well and that you can get some good news. This will be my first resection so I guess I want to weigh all my options before they cut on me. In my colonoscopy, they could not get past the ileocoecal valve. I'll be honest, I can't remember half of what the surgeon said; I guess I was overwhelmed and I still feel that way. I have had two other abdominal surgeries not related to crohns (gallbladder and hernia repair). I'm just wondering, is a resection more painful than those?
Hi Vonnie,thanks for your message,I have also had a hernia repair and gallbladder op,all related to my Crohns as well as a fundiplication surgery for gastric reflux,and two Caesarian sections,so they are not too happy about me having further surgery,and to be honest I thought this balloon Dialation may be an answer,I am not too hopeful that they are going to give it a try,
With your question regarding bowel resection,everyone is different and there pain barriers are different,with me the pain was horrendous and this is what puts me off having another bowel resection,when I explained to the surgeon,he did not disagree with me,but said there are pain relievers such as epidural during the op,I explained this has never worked with me,they said because of other ops I have had,had caused scar tissue and this prevents it from working properly.
I will be honest it is not a walk in the park,and is painful,but you have to weigh up the pros and cons.
I am fed up of living on such a restricted diet,which now only consists of chicken,fish,mash potatoes,jelly,cakes,rice krispies,and very soft foods that mash up,no veg,no salads,no fruits.it is bad but livable I suppose.
I have got up really early this morning,had a bowl of Rice Krispies with milk really early,and a cup of tea.thats it now regarding food and my goats milk and soya.have to take my Picolax at 9.00 am. Wish me luck.
What type of diet are you having at the moment Vonnie,is it similar to mine??
Also I am on azathioprine 100mg not my proper dosage for my weight,but this is all I can tolerate due to it affecting my Liver.
Cannot take Pentasa anymore either,this caused me Liver problems after 18 months.
Do you work.I have too,work about 30 hours a week.which some weeks,I just do not feel like it,but hey we have to carry on.
Will let you know how I get on after tomorrow.
Take Care

Trish x
Thanks for the info. I appreciate the honest answer. I am hoping the balloon dilation works for you and I'm sending positive thoughts your way. I also work full time and this disease has caused me misery where work is concerned because of my frequent bathroom issues. Luckily I have some understanding coworkers. As far as diet goes, I can tolerate a lot of things except raw veggies and pork. I was on a gluten free diet but it didn't seem to make much difference with pain or diahrea so I am off that one. I can say that the D that I am having pretty much dictates how much food I eat or don't eat rather. I feel like I am trying to work around my stomach issues all the time. I am always afraid I'll be too far away from a bathroom and then I'll embarrass myself. I am still trying to accept this disease and I hate it too. I don't want it to control my life but it feels like it is all consuming at times. Best wishes again. Let me know how it goes:)
Hey Vonnie,

It is tough to make the surgery call. Your story is my story (and many others unfortunately). After 10 years I opted for a resection to get rid of about 9 inches of strictured bowel. That was 10 years ago and I had many years of relief. The surgery was miserable (and i do mean miserable) but glad I opted for it. I have obstructed 6 times in the last 3 years (4 times this year) and just started prednisone. A CT Enterography done 2 weeks ago showed a fixed stricture. I knew that without the CT based on my symptoms. I am planning on my next surgery. I don't have the details of the stricture yet but strictureplasty seems to have pretty limited use and mostly needed for bowel sparing so I am going to my surgery consult thinking that surgery will end up being the result. I am mentally and physically preparing for surgery. Continue to research your best options and take your time if you can. Also, strictures can also result in perforation so that should also be considered. Good luck!
HARVin Texas I am glad to talk to people who know what I am going through. I know surgery is probably in the near future for me, I just have to get psyched up mentally for it. I have a fixed stricture and the surgeon told me that my stricture is too long to do a strictureplasty. I know it won't be easy but will it be worth it? I wish someone could tell me I wouldn't have diahrrea anymore. Did you have trouble with that issue? and did the surgery help with the diahrrea? Thanks.
Vonnie, I did have improvement with the diarrhea. When flaring (1st stricturing), I would go between 16-20 times/day. I was not good at regulating food intake to try to manage the BMs. After surgery I did have a mostly normal routine for quite some time (years). I never really tried to identify trigger foods or patterns to limit BMs but in general I did not have major issues. I have lived a very active work and social life. My current flare has had me going and going but it has slowed with the prednisone and restricted diet. For me, I will opt for a 2nd surgery primarily so I can enjoy a regular meal without fear of obstructing/pain/perforating. The 2nd surgery has been a more difficult decision since the first day post sx was so miserable. But looking back, it really only was one day of misery that I traded for years of doing very well. Just talking it out with you is making me feel better about my decision. The unknown outcome is scary but the payoff can make it very worth it! If you want to learn of anymore of my experiences, let me know.
I have a fixed stricture and the surgeon told me that my stricture is too long to do a strictureplasty.
How long is too long? My 12 year old son has a 6 inch stricture in his small intestine. I've always wondered if strictureplasty might be an option for him, but maybe not??

Just curious...
I think that strictureplasty is sill possible with a 6inch stricture and when I had mine it did last around 10 years,I have had two bowel resections and one strictureplasty(and I have another 5 cms stricture in T/Ileium) and all of them have lasted around 10 to 12 years,with only the odd grumbling a started a year or so before each one operated on.
It looks as though I may be heading for my 4th op,but it makes me feel a little better knowing that people have had more than this amount of surgery done.
I tend to agree though,hold on to your bowel as long as possible.
Sending best wishes to our son
Thanks, Trish22. He's begun vomiting again after meals recently and that's the last thing we need since we're trying desperately to get him growing. If it's due to the stricture then this is the third time in a year and I am not thrilled with the idea of putting him on prednisone yet again. The pred works great for a couple of months, which leads me to think there is some inflammation involved, but then he's back to being nauseous and vomiting again two to three months later. Is is true that with each flare he could just be building up more and more scar tissue in the stricture?

Our next options are moving to 6MP and/or surgery and I've read horrible things about teen boys being on 6MP, so I'm trying to learn more about surgery. If we could get a good 10 years that would be wonderful!

This thread has been extremely informative. Thanks for posting it, Vonnie!
Yes that's right about the imflammation,but that's why it is so vital to get meds to get the imflammation under control,to keep scar tissue to a minimum.As he been offeredRemicade or Humira,both worth trying,I have had Remicade and they did say it reduced my scar tissue/stricture slightly,but it does not make scar tissue go away.
Read up as much as you can,and decide what is the best route for your son
Good luck
Mehita, my personal experience over 20 years is that once the partial obstructions start occurring more frequently (vomiting and abd pain), then it is getting closer to deciding on surgery. Since yours is with a growing boy, I realize there are additional needs that need to be met. I hope that you are able to work with a team or peds GI and surgeon to discuss options. The chronic inflammation continuously works against us in laying down scar tissue so I think it would be prudent to think that the stricture is always narrowing. I have yet to find a medication other than pred that reduces my inflammation and that is just a temporary solution. I think reaching out to others with successful inflammation mgmt in the forum would be helpful.

A purée diet may be helpful although I can't see an adolescent enjoying that too much. I ordered a purée recipe book and should receive it today. I will try some of the recipes and hopefully post next week about the results. I am on day 10 of pred and my meal last night was not fun so don't think I am ready for solids yet. Just hopeful I can put off my own surgery until about March.

It sounds like you are on the right track with your research and hope for the best outcome for your son!
Mehita, I'm not sure how long my stricture is but it is definitely a good question for your son's gi dr. I wish I could be of more help but I see others are posting some good suggestions. I sure hope all goes well with your son. Prednisone is good but it also does some weird stuff to you. I am currently being weaned off of pred, am on entocort and pentasa. My pain is gone but other symptoms linger although I know they are different for everyone. Good luck and don't give up; keep asking questions.


Naples, Florida
Our next options are moving to 6MP and/or surgery and I've read horrible things about teen boys being on 6MP, so I'm trying to learn more about surgery. If we could get a good 10 years that would be wonderful!
I assume you're speaking of the Hepatic T Cell lymphoma? If so, that's more when 6-MP is taken in conjunction with a biologic. 6-MP alone is pretty safe in young men when properly managed.
HARVinTX, I have the same issues you have. Prednisone has helped but the D is back. I don't feel like I am so terribly bad off as to have surgery because I am not having the severe pain I was having. I am not following a specific diet at the moment and I have identified two or three trigger foods. I went to the ER in April in excruciating pain and that was the beginning of my correct diagnosis. The surgeon didn't say I hadto have the surgery tomorrow but I don't want to postpone the inevitable as he did say the stricture is not going away which I know. I am guessing they will do another SBFT to see how much the medications I am on have helped or not. Did you have your ileocoecal valve removed as well? I think I am somewhat in denial because I don't remember half of what the surgeon told me as I had already made up my mind that I wasn't having surgery before I left his office. I guess I feel like I can handle the D without the pain since I have been living this way for months. Does that make sense?