Whether I have to have resection operation?

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New Member

Date Joined Sep 2008
Total Posts : 6
   Posted 9/18/2008 8:29 PM (GMT -7)   
I was diagnosed of Crohn's disease more than 2 years ago. From June this year, I felt abdo very painful after meal. In July I was inpatient and found terminal ileum narrowing with scar tissue. After treating with prednisone for more than 1 month, I feel pain relief at the moment. But I am just eating soft and fluit food and nutritious power. My GI told me medication cann't help on scar tissue, my surgeon said finally I need opeartion and he suggested me to get resection operation to remove the narrow part of bowel. But I know surgery cann't cure the disease and may cause other complications.
My terminal ileum is narrowing with scar tissue, not blockage at the moment. Anyone have simialr situation as me? And would you please give me some advice about that? I don't know whether I should get operation at the moment or continue medication and wait? I don't know what I should do is the best for my condition. My Dr. also cann't give me exact answer.:-(
Please tell me your story if u have similar situation as me. Many thanks!

Diagnosed with Crohns in December of 2005.

Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 9/18/2008 8:49 PM (GMT -7)   
Hi Pearl!
I'm actually in kinda the same situation as you, only I'm headed off to have surgery in about 5 hours.  I had a resection about 6 yrs ago, and was in remission for that long, in April I started getting really sick again, and had a horrific flare up that put me in the hopital for a couple weeks.  I was put on prednisone 100mg a day, which kept everything under control, but when I started to taper down it all went down hill. We tried Humira, but I didnt notice any difference, my GI said it might be because of the scar tissue. So Im having 4-5 inches of active crohns being removed, plus some scar issue that is narrowing, my GI said would never go away unless removed (which kinda doesnt make sense to me, if you remove it...you'll get scar tissue again, no?) But, what do I know.  I fought with my GI for a good while because I did not want surgery again, but at this point I just want to get it done and over with so I can stop dealing with this stuff for a while at least.  I feel like I'm making the right decsion, besides the fact that I cannot be on Prednisone the rest of my life to keep me stable.  Hopefully this does the trick.  Really, its up to you...I'm just at my wits end, and just so tired of medication not working.  Do some research, and get some more advice from people here, hopefully that will help you. Goodluck with everything!!
Dianogsed with Crohns at 16, 21 yrs old now.
Surgeries:1 Bowel Resection, Gallbladder Removed. Another Resection Scheduled for September.
Current Meds: Humira (weekly), 60mg Pred, Levbid, Nexium.

Veteran Member

Date Joined Jan 2003
Total Posts : 6130
   Posted 9/18/2008 9:43 PM (GMT -7)   
pearl, only you can decide when to do it if its necessary.. maybe you can get a second opinion from another surgeon?


New Member

Date Joined Sep 2008
Total Posts : 6
   Posted 9/19/2008 12:28 AM (GMT -7)   
Thanks MAG102886, I hope you all the best in your sergery!!!
Thanks randynoguts, I read your story, you are so brave! It is very hard to make decision for me. My terminal ileum is narrowing with scar tissue that won't be improved by medication and I cann't continue prednisone even I feel better after taking steriods for more than 1 month. If I continue medication and wait, then I will live with narrowing, finally need operation. If I go operation at the moment, then it can give me normal diet for some time and get rid of steroids, but surgery cann't cure the disease and with high percentage to get seconary operation in the future, also surgery can cause some risks and complications. I don't know what I should do.

Diagnosed with Crohns in December of 2005.

Regular Member

Date Joined Sep 2008
Total Posts : 54
   Posted 9/19/2008 12:30 AM (GMT -7)   
Pearl I am in such a similar situation to you and I also cant decide! The questions i have are: how much bowel do they want to remove, because if they take away too much you will have absorbtion problems. Will they take some of large bowel too, in which case you lose your appendix, and is that a problem. would you also lose your ileo-caecal valve, which stops matter going back from your colon to your ileum. Also like you I fear that there will be more scaring as a result of the operation.

Then I think maybe you can manage with a stricture as long as it doesnt get any thinner and you dont eat too much insoluble fibre. Maybe thats wishful thinking and mabe an operation becomes essential if your bowel just kind of closes up. So Im really sorry I cant advise you because i have the same dilemma but best of luck and also have a look at some of the answers to my earlier post on resectio, they might help you.
had crohns for 15 years took pentasa then nothing but diet but stricture appeared 3years ago and problems since.

New Member

Date Joined Sep 2008
Total Posts : 12
   Posted 9/19/2008 6:38 AM (GMT -7)   
I can't help you decide, but I can tell you my story. I had a similar situation. My terminal ileum was so diseased, and no meds were working for me, so after lots of worrying we decided that we had no other options and went for the surgery. They took the last 8 inches of small bowel, a little of the large, and the appendix. My doctor told me that if they did surgery they would take the appendix regardless of what else they were resecting. He said that there is a very real possibility that if I had appendicitis that I would probably pass it off as Crohn's pain and ignore it, which is a very bad thing. The resection was the right choice for me, I was pain free for a few years, and have not had any more problems in that area, I have new strictures in different places, but that has nothing to do with the surgery. I do have absorption issues, mainly protein.
25 years old
Diagonsed in Jan 1997 with Crohn's Disease
Sick since Nov 1995
Diagnosed in June 2005 with Osteoporosis
Current Meds: Humira pen every other week
                    Methotrexate 25mg every week
                    Folic acid, multivitamin, calcium daily
Previous Meds...so many!

Regular Member

Date Joined Jul 2006
Total Posts : 73
   Posted 9/19/2008 8:13 AM (GMT -7)   
Hi Pearl, I replied back to Penelope's topic on resection. Take a look at it.

But i personally think don't get it done unless you're in pain. I waited for as long as i could. Even though i ended up in the hospital a few times. But if you feel that you're having constant bowel obstruction and are alway put on prednizone then do it.

Resection of your terminal ileum and part of your colon will have an impact on absorption. And there is no guarantie whatsoever. You never know when it will come back. I don't think temporary relief is good enough of a reason to get a surgery done. I do think i made the right decision of doing it but a year after the surgery some inflammation has already come back.

So basically, if you're not in pain and can manage a somewhat normal life, then wait.

The decision is yours and don't rush. Think about all the options and the pros and cons please.

Let us know what you decide and i wish you all the best!

Regular Member

Date Joined Aug 2008
Total Posts : 320
   Posted 9/19/2008 9:20 AM (GMT -7)   
Hi Pearl,

I am in the same boat. I have ahd 2 resections involving large and small. I now have a stricture at the terminal ileum also. I have been living with it for years. I eat mostly white foods, with almost no fruit and very few cooked to death veggies. Up until now, for the most part, if I was careful what I ate, I was okay. There were of course "normal" flares, but I have lived with it. The flares, when they come are merciless and usually involve hospitalization.

Okay. My stricture has narrowed to the point where it is skinnier than a very thin pen. I am at the surgery point and have a consult ocming up in Oct. I cannot tell you what to do, but seeing as you asked: My advice is to wait if you can. Surgery brings forth scar tissue, scar tissue causes sctrictures. My stricture is from scar tissue and deep inflammation. If you can live with this, I would suggest maybe you wait. Unltimately the choice is yours. You know how you feel & I do not.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
When I am weak, then am I strong

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