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SURGERY ? ? ? ? Opinions please!

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Crohn's Disease
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Posted 5/29/2009 12:19 AM (GMT 0)
I am a 30 y/o with Chrohn's.  I was diagnosed with the disease only 6 years ago.  I have tried many different combinations of medicaitons.  I am currently on entocort, 6mp, and lialda.  None seems to be working.  I am not sure what 'normal' feels like, but I would like to feel semi-normal at some point.  My GI has suggested surgery in lieu of biological agents.  The effected area is the terminal ileum.  On my small bowel series it was shown to be very diseased and narrow.  Any suggestions on the surgery? 

I am a very healthy person, what is the recovery like?  It should only be a very small portion of the bowel that is being removed.   If you have had part of the TI removed, what are the effects afterward.  I was reading about B12 absorbtion and it being limited, and chronic diarehha (no different that now! :-) ) 

Thank you very much!

Posted 5/29/2009 1:09 AM (GMT 0)
The recovery is easy. You might need some b-12 shots afterwards, because I blieve if I'm remembering correctly that b-12 is absorbed through the terminal illieum, which is what gives you energy, makes you feel no fatigue.

I would not go for surgery before a biologic, just doesnt make sense to me, because we all know that if you have one surgery, then research shows us that its a 50-50 chance you will have another surgery. and its well known that if you have surgery, that the disease most of the time shows back up where the prior diseased portion was, it just moves up or down from the original spot of disease. I would seriously not do surgery first. BUT you have to trust your doctor, there may be issues to your case specifically that makes him want to bring this up first, everyones case is different, and remember us here at HW no many or how much experience with the disease we have, they are the experts, literally. if you do try biologics, I would recommend Remicade, some people give it a bad rap, but the bottom line is, it has the same side effects, or possible side effects of every other medication. There are medicines like 6mp, and imuran which are related and i personally dont like, because it can severely mess with your bone marrow, and cell counts, like life threatening changes. Just remember the benefits of the medications far outway the small minimal risk.
Posted 5/29/2009 11:14 AM (GMT 0)
If I didn't have surgery when I did, I would have had emergency surgery which no one wants to have. I would ask your doctor how bad the stricture is, if you had a SBFT they measure to see how narrow it is. As to taking out a little bit, I was told that they would probably take out 6-8 inches. After opening me up, they ended up taking out 18 inches. They really don't know until they open you up.
Is surgery the right choice for you? Only you and your doctor can determine that.
As for B-12, I had my TI removed and I now have monthly B-12 injections. B-12 and other vitamins which I can't remem er are absorbed in your TI.
I know it is hard and scary to have surgery, but only you can decide on having it and when to have it.
Good luck!
Wolfie
Posted 5/29/2009 11:22 AM (GMT 0)
i had my TI removed and now currently in remission i have b12 injections every 3 months coz the bit they took was the only bit which absorbs b12,my recovery was quite long becuase i was so weak and sick before hand,i was in hospital for 2 weeks while they waited for my tum to start workin again,it was defintly worth it i was in so much pain i basically couldnt eat got down to 48kgs really gave me a new lease on life
Posted 5/29/2009 1:03 PM (GMT 0)
Ahhhh...it seems like only yesterday when I came across the decision of where to go when nothing was working. I considered surgery, and came very close to it, but remember this is not a permanent solution to a permanent problem. It will put you in remission for at most 7 years I have been told and then your Crohns will come back. Plus you will be needing to give yourself shots, and take vitamins, for the rest of your life; not fun.

Have you considered Remicade, or another immunosuppresent? Remicade has worked wonders for me and I got to keep all of my intestine.
Posted 5/29/2009 2:08 PM (GMT 0)
My first resection was an emergency, and I can tell you that was very traumatic for me. But what helped me make the decision to for the second one was my quality of life. That's what you need to think about. Is your quality of life so poor, no medications working, then I would think about the surgery. Also, if you stricture is from scar tissue, not inflammation, no meds are really going to improve it. But if it is from inflammation, then meds can help. That might be a question to ask your doc. Many folks have had resections and gone onto long long remissions. I know CrohnieToo had a resection when first diagnosed and went on to have a 20 year remission afterwards.

I do have to have B12 shots bimonthly now. And only a few have chronic diarrhea afterwards. I actually still battle constipation more. Hope that helps.

Hugs,
Gail *Nanners*
Posted 5/29/2009 2:57 PM (GMT 0)
I have not had surgery, but have seen many experiences here from those who have. It seems to me that the determining factor in your decision would be based on whether the TI narrowing is primarily from scarring or inflammation. If the former, surgery is probably inevitable at some point, and as had been noted, it makes more sense to schedule it now than to do it in an emergency blockage situation. If it is primarily from inflammation, then Remicade or Humira mak make more sense in hopes of finally bringing your CD under control and into remission. This is hard to tell from SBFT alone. Have you had a colonoscopy lately where they were able to visualize the TI? That would be the big test for me -- take a look and see precisely what is up in there. Even if it is largely inflammation, surgery would likely have the effect of inducing a remission, since it would remove the prmary area of disease activity, though there is no way to predict how long you would go before the CD kicks up somewhere else. I think in your position -- given your youth -- I would want to know for sure what the pathology is in the TI before proceeding to the knife. 

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