cd in sm. bowel only

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artist guy
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   Posted 3/5/2011 6:59 AM (GMT -6)   
So I'm usually posting on cd thread. so here goes. My sister has a ostomy, and she has told me I should think about a bag. no more med's for her, pain just once in awhile. I am on ssdi. I'm on rem and vic's for pain. I know it's a matter of time before I'm dependant on pain med's. can anyone decide to have ostomy? or like my gp told me, I'm not qualified because my cd is so high up, have never talke to gi about it. he seems to think I can medically manage, and keep my colon or sm. bowel. My Q. is if your colon isn't involved how do they do it? bag that is. I've had cd for 40yr's, with 4 surgeries and 9ft of sm. bowel.  removed.  my med I forgot to mention ent. as well. side effects from rem is as bad as cd, just different. I mean I have muscle pain really bad in my back from rem.
 
AG

Post Edited (artist guy) : 3/5/2011 6:21:42 AM (GMT-7)


Trigirl
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   Posted 3/5/2011 12:22 PM (GMT -6)   
I fought the ileo idea for years and could have had it easier years earlier if I just took the leap.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

killcolitis
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   Posted 3/5/2011 12:32 PM (GMT -6)   
A colectomy won't help if your small bowel is all that's involved. Removing the colon will not remove the CD in your case unfortunately.

stripey
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   Posted 3/5/2011 12:57 PM (GMT -6)   
I had an ileo performed as although I had disease in small bowel, the disease in the colon was the worst area affected. They got the ileum into remission and once that had settled down then they did the ileo.

The original plan was to reconnect after usual 6 months but colon so badly diseased said they would never be able to reconnect. So since original op have had periods of flare, more settled when I started azathioprine 16 years ago, and two abcess around stoma so had to be resited twice.

However, without the ileo think I would have had to give up work years ago as was getting to the stage where I was in hospital more than I was out of it due to malnutrition and dehydration as unable to absorb anything.

So have a word again with your GI, as it will be his ref to surgeon not your GP. The ileo has worked for me, even with problems I have had in the 19 years I would not have changed it for anything, it gave me back my life, so a few ups and downs on the way are nothing.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

artist guy
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   Posted 3/6/2011 9:41 PM (GMT -6)   

I have another Q. is an ileo an ileostomy? and my cd just involves my terminal ileum, how do they do that if your colon is OK? I've been gone saturday night so I just got home but I appreciate your respones, I need info to ask gi. I mean to me it's managable with med's, but I need to take pain med's as well, so the idea would be to get off med's entirely.

AG


stripey
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   Posted 3/7/2011 9:47 AM (GMT -6)   
Yes ileo is ileostomy. It will depend on how much of ileum is involved, your GI should be able to talk through the various options as they may be other surgery they can do which may be more appropriate in your case.

Hopefully others who have j-pouches and other ops will be able to tell you what area they were effected and whether it helped or not. Mine was done 19yo and times have def moved on since then.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

artist guy
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   Posted 3/7/2011 12:26 PM (GMT -6)   

thanks stripey, he did mention the other day if med's aren't helping, consider going in and touching it up, he used another word, but that's my definition. So if I said I thinking of ileo, he would be a little shocked, it's a huge decision. Never thought it would ever be in my brain waves. I have constant pain, not horrible pain(rem, vicodin)so I try to stay on top of the pain, try not to get to the bad cramping type. I don't think their is alot of ti left to remove, I'm already missing 9ft. it's probably 4-6 inches. if that much. I feel like I have a thorn in my shoe, and I can't run, can't walk much, no matter what that thorn always hurts, if you know what I mean. so does that constitute giving me ileo? I think the rem has kept me from surgery now, and the pain med's really help in keeping comfortable. I don't know what, I'm pretty disgusted right now.

AG


stripey
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   Posted 3/7/2011 2:06 PM (GMT -6)   
It would be interesting to ask him if you had surgery would this alleviate the pain for you. As from the sound of it, if it could knock the pain on the head it would give you a better quality of life. I know that since I had my ileo done the pain has gone from 8 down to 0-1. Only time I have had really bad pain after op was when I got abcesses around the stoma (twice) and when I had an obstruction (stricture twice). Rest of the time no CD pain at all.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

artist guy
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   Posted 3/7/2011 2:20 PM (GMT -6)   

Oh I've had surgery induced remission, it seems thats the only way for me to find true remission, i've had this crap for 40 years. that will be a Q from me to gi.

AG


stripey
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   Posted 3/7/2011 3:59 PM (GMT -6)   
Hopefully he can answer those omportant questions and that you will eventually get some relief from it all. However, with having an ileo and having colon taken out of the equation and also taking into account the amount of small bowel you have already had removed then you could be at risk from short bowel syndrome depending how much is left before the stoma. It is what I have a problem with, not been an issue til late last year and think it is now getting under control again. Just means you have to be on guard for malnutrition, dehydration quicker than a normal stoma and vitamin/mineral levels being low. Most can be fixed with supplements diet changes and if D then immodium/lomotil or in my case codeine.

Also the ileo is no guarantee that the CD won't flare up instead in the small bowel, which is what mine did. Unfortunately, as you know with CD it can move around whereever it wants.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

artist guy
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Date Joined Jan 2010
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   Posted 3/7/2011 6:29 PM (GMT -6)   

I have short bowel syndrome now. one of the main reasons for my perm. disab. You definetly have gotten my attention, with this thread. that is one of the reasons for my pain med usage is because of dehyd. and malabsorbtion issues, slows things down abit. I do an art show every other weekend, and every time I come home, monday seems like a recovery day for me. certainly not overly thrilled about this. thanks so much stripey for all your wonderful replies.

AG


stripey
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   Posted 3/8/2011 10:12 AM (GMT -6)   
That's ok. Trouble is what works ok for one person doesn't for someone else and also what is acceptable in terms of symptoms/problems again is ok for one person and not good for someone else so it is all relative really. But if you already have short bowel syndrome then how much have you got to lose really. At least with a bag no more rushing to toilet, D can be controlled by immodium, codeine, questran etc and I make sure I drink 250ml of fluid an hour to counteract any dehydration and eat lots of crisps in summer/hot weather for the salt intake.

Good luck with your appointment and hope he can give you so positive news and something to aim for.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
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   Posted 3/10/2011 11:15 AM (GMT -6)   
Artist guy, good luck. I remember you from the Crohn's list. I had surgery two weeks ago and have mostly jumped to this list. No advice, as your situation is very different, but I'm glad you're getting help here. Hope you get some relief, one way or another.
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