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I really need Advice - To Cut or Not To Cut?

I'm 32male diagnosed with Crohns about 8 years ago, mostly restricted to terminal ileum, IC valve, a little in cecum. GI just recommended elective resection surgery. I'm looking for advice on whether I should do this.

I have long standing and what apperas to be never changing 7inches of inflammed terminal ileum. last 2 colonsocpies were unable to cannulate the ileocecal valve as it was swollen shut both times, referred to as a "partial obstruction." MRI 2 years ago showed this inflammed segment, thickened. Treated with humira max dosage (1 shot per week) for at least the past year. Just had another MRI and NO CHANGE! grrrrrrrrrrrrrrrrrrr!

My symptoms, however, are not severe, at least the humira seems to keep them mostly in check. I do have flank tenderness, which I have had for years and years. It is uncomfortable to lie on my stomach, and sore to the touch and painful when pressed. I do get occasionally crampy pain, but very sporadically, and I do get some weird pinching feelings in that area and sharp pains out of nowhere. Fatigue, yes of course. I do get some nausea here and there. As for diarrhea, it does seem sensitive to what I eat. Where if i mess up I could have a rough 24 hours or so with many trips to the bathroom. But, I'm so used to coping with this that honestly it doesn't seem to get me down too much. I'm just used to low energy and stomach issues. Who doesn't have stomach issues? I think I do restrict some of my activities, e.g., it may make me nervous do things if i think i don't have a bathroom nearby. But, again, the pain I guess is moderate and I guess under control.

As for complications, I had one absecess a few years ago, high grade fever, liver inflammation. went away.

So, what do I do? I feel like I'm in a good place in my life to have this kind of surgery. And I like the idea of getting rid of this nasty tissue that just doesn't respond, and I really want to get off the humira (my GI said we would consider going back to something less agressive after the surgery). BUT, I admit that I don't suffer the severe symptoms that I know many people have (no weight loss, no vomitting). So should I wait for a complication or for more severe symptoms before going under the knife?

I really don't know what to do here. What I read suggests the approach of no surgery until last second, but some articles counsel against that, as it makes the surgery more difficult, more problems, etc., and that it can be better to do it elective when under control.

Your thoughts are greatly appreciated!

:depressed:
 
Well, I hear ya....I had the same resection when I was 27 (eons ago ...30 years to be exact). But I was young, dumb and had no idea what Crohns was all about. Had I had some idea of just exactly what I had, I might have had the same questions you are having. My only thought process was "if it is bad, take it out!" I never gave it a second thought that it could cause worse things later. Guess the dumb thing worked for me. :)

Now, having said that, the resection was the best thing I ever did. My Crohn's was discovered when my appendix burst. So I had been sick for some time and didn't even know it. I went from being sick as a dog to mighty healthy. It is amazing when you get all of that bad stuff out of you how good you feel. I was having not really the big D but pretty close to it. I then had somewhat normal BMs and it was heaven. No more pain, no more checking for bathrooms when entering a building, no more bad stuff at all. Pretty normal for quite a few years.

I actually never had any more Crohn's symptoms until several years ago when I started in with the fistula. That started me down the road on 6 more surgeries for that. I now am on Remicade and it has been a god send.

I know there a ton of people here that have had this done, and I know, also, that they will chime in here soon. Hopefully all the answers you get will help you make the right decision for you. Hang in there, my friend!
 
Hi,
I say do it. I've had 3 surgeries and they are miserable. But, then a few months goes by and you're as good as new. On my last surgery, I finally got rid of all the bad parts and I'm a new man.

You asked "Who doesn't have stomach issues?" - I don't - at least for now :)
I can eat anything, do anything, not worry about bathrooms.

Plus, maybe your surgery would be laparoscopic for a quicker recovery.
 
yes, laparosopic surgery is what I am told they would do. Oh it is so nice to hear even from just the two of you on this! I'm desperate for some practical advice. i think I want the surgery, but it is hard for me to explain to my family who I think would expect me to be really suffering severe symptoms before electing for a surgery. People aren't so sympathetic if I'm not bed ridden. But I'm like - why wait for some awful complication and emergency surgery?? IF the inflammation ever heals, I assume it will just turn fibrotic and really cause me problems. So Thanks and I can't wait to hear what others have to say!
 

Cat-a-Tonic

Super Moderator
I haven't had surgery so I can't really comment on most of this, but I wanted to say that if it is "elective" as you say, the insurance company may not pay for it. Most insurance companies don't like to pay for things that are necessary, and if they find out it's elective, you may be in for a fight with them to get them to pay anything. Just a thought.

Edit: I just realized you may not be in the US, in which case you may not have to worry about paying for medical care in the first place. But if you are in the US, look into what your insurance will cover and get it in writing if they say they will pay for the surgery. Where are you, by the way?
 
good point Cat-a-Tonic. That would certainly answer that! But I have to hope that the term "elective" has different meaning for insurance purposes for bowel resection as compared to say a face lift? (It certainly does to me!)
 
I haven't had surgery so I can't really comment on most of this, but I wanted to say that if it is "elective" as you say, the insurance company may not pay for it. Most insurance companies don't like to pay for things that are necessary, and if they find out it's elective, you may be in for a fight with them to get them to pay anything. Just a thought.

Edit: I just realized you may not be in the US, in which case you may not have to worry about paying for medical care in the first place. But if you are in the US, look into what your insurance will cover and get it in writing if they say they will pay for the surgery. Where are you, by the way?
Excellent point...I always forget this is the "world wide web" !!
 
I haven’t had to have surgery yet, so I cannot give you advice there. But I do know in the medical field an elective surgery is normally one that doesn’t have to be done right away, but does have medical necessity for being done. So, it will probably be covered, but do double check with your insurance before you go further with surgery.
 

Jennifer

Adminstrator
Location
SLO
If medication obviously isn't working then I don't see the harm in removing that small section before it gets worse and worse. The scar tissue isn't going to go away so I'd just get rid of it. I had 8 inches removed 11 years ago and only recently started having minor symptoms and inflammation since my surgery. Its not a cure but for many people it helps their quality of life ten fold. If it were elective surgery to remove areas that aren't infected, or are infected but you haven't even tried medication then that wouldn't make sense but that isn't the case here.
 
hi there, this is just my personal take on the situation, and at the end of the day it has to be your own decisions, made for the right reasons...

if i'd had that wonderful elusive thing called hindsight, many years ago, i would have pushed harder for a proper diagnosis and had the diseased area removed immediately. as it was, it ruined all my teenage years and into my 20s before someone took me seriously enough to do a biopsy and found i had Crohns - by which time it was too far gone to be helped with meds and i needed extensive surgery (which was a long drawn out horrid episode in my life).

so that's me - i would say yes, go for it. if you're strong now, but know you have this inflammation which is bound to be pulling you down, and may flare up at any time, i would be desperate to get it out if i had the chance.
 
hi there, this is just my personal take on the situation, and at the end of the day it has to be your own decisions, made for the right reasons...

if i'd had that wonderful elusive thing called hindsight, many years ago, i would have pushed harder for a proper diagnosis and had the diseased area removed immediately. as it was, it ruined all my teenage years and into my 20s before someone took me seriously enough to do a biopsy and found i had Crohns - by which time it was too far gone to be helped with meds and i needed extensive surgery (which was a long drawn out horrid episode in my life).

so that's me - i would say yes, go for it. if you're strong now, but know you have this inflammation which is bound to be pulling you down, and may flare up at any time, i would be desperate to get it out if i had the chance.
Couldn't agree more....same story here. I was so glad when I had all the bad stuff removed. But as I said, I was young and dumb. You have more knowledge than I had when I made the decision. But leaving the bad stuff in can do more harm that good I would think.

And yes, the decision has to be yours for the right reasons. We all have had to make those decisions at one point or another with this disease. Not fun and very confusing. I know you will make the right decision for yourself.
 
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Thanks for the thoughts so far! Its nice to hear that I'm not crazy for considering (and wanting) to get rid of this diseased tissue before I start to really have bad problems.
 
I am having the same experience as you sf925414!

I am exactly like you and can totally identify! I have a fibrotic/broken and strictured terminal ileum and IC valve, but I am not really having any Crohn's issues. I haven't had D in forever. Cramping w/BM's, pinching in the lower right, feeling block sometimes are pretty much the only things that affect me. (Granted I have been on a low res-diet for 2 yrs:()

Anyway, I have scheduled myself for a resection Dec 28th!

I have decided to do it because having a planned surgery will be much better, than opposed to emergency surgery. Right now I am strong and should be able to bounce back pretty quick.

However, as the date gets closer I am getting more nervous:( I think I have made the right decision though....especially since during my colonoscopy last week, the doc couldn't get through the IC valve! It is very fibrotic:( My colon was ulcer free though...for the first time in 5 years:))
 
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Oh I wish you the best and speedy recovery! thanks for your thoughts. I wonder - how long have you suffered with this? I ran an expirement and stopped my weekly humira shots -- missed the last 2 to see what my symptoms are really like - my experiment proved, well, I guess useful - sure enough, my gut was NOT happy! nausea and D - of course I assume that could be a reaction to withholding the humira. anyway good luck with everything! I should hear tomorrow if the surgeon will see me (which I guess means he would be willing to operate).
 
thanks again everybody! saw the surgeon today - we're going forward. i'll post a new thread as I don't know anyone else to really talk about this with! Surgeon said, "the writing is on the wall ... but I could wait if I wanted but i'm gonna need it," which i guess was what i needed to hear.
 
I think you are doing the right thing...my SO just had surgery last week after years of avoiding it against medical judgement (and years of avoiding diagnosis before that) and it turned out to be very extensive. (details in my other thread in the Treatment section). I believe if he had done this sooner, it may not have gotten so bad and the recovery would definitely have been easier. His SB series showed approx 5 strictures but he actually had 20.
Best of luck, I am sure you will do fine and feel so much better afterwards!
 
Hi. Will keep this short. GO FOR IT!! I waited until i was almost dead (no kidding). I had 9" removed and have never looked back! Good luck!!
 
sf925415

Oh I wish you the best and speedy recovery! thanks for your thoughts. I wonder - how long have you suffered with this? I ran an expirement and stopped my weekly humira shots -- missed the last 2 to see what my symptoms are really like - my experiment proved, well, I guess useful - sure enough, my gut was NOT happy! nausea and D - of course I assume that could be a reaction to withholding the humira. anyway good luck with everything! I should hear tomorrow if the surgeon will see me (which I guess means he would be willing to operate).

I think I have had the stricture for 2-3 years now, but after a really bad flare in April 2010 the pain has never gone away...even after Remicade. I am currently in remission and just on Imuran.

Thanks for the well wishes, best of luck to you!!
 
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