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What have been your main complications with Crohns/IBD?

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Posted 9/12/2007 12:38 PM (GMT -8)
I  have had Crohn's for a little over 20 years and my pain problem has been in my small intestines near (terminal ileum). My hospitalizations have been small bowel resections, ruptured ulcer, hysterectomy, strictureplasty, small bowel obstructions, gi bleed, blood clot and staph infection to name a few. Lately it seems like I will be doing good and then I get a flare that is ongoing and I wind up in the hospital. I am really afraid that is going to happen again so I have been taking some pain medicine and put myself on a liquid diet. I was last in the hospital in Oct 2005 for what started out as a blockage and ended up being there 2 weeks and then home a day and back for a week with a clot and staph infection in my right arm where a PICC line had been I told my husband that if I knew that I could get out in 3 days or even 5 I would probably go now but this has been going on a week so far. My GI told me that I dont mess around when I get sick that I take the whole 9 yards. That is what worries me. If I have more surgery I am in danger of having short bowel syndrome and they narrowly avoided it last time. The blockage had cleared and I was still in major pain until they did Remicade which I just had on Sept 1st. My 10 yr wedding anniversary is tomorrow and I am concerned I may be spending it in the hospital.    How do you all cope with the complication? Do they end up with you going to the ER or do you take pain medications, adjust diets or what works if anything?
Posted 9/12/2007 12:46 PM (GMT -8)
I have had CD for 20 yrs. My biggest coplaint thru the yrs were my joints. When my gut did flare I more commonly had C rather than D with a few exceptions. This year I had the most complications though. Ileum perforated so I had Sx then colon never woke up causing toxic megacolon in 1/3 of my colon, dumb resident got feces in my incision 2 times causing me to need a wound vac. I also had a few abd abscesses too. My 2nd Sx was to get a temp ostomy. The stoma never healed right and feces was leaking into my abd cavity. I had the reversal where they found they had to scrape my abd wall due to infection and remove many adhesions in addition to the reversal, abscess removal, and removal of more of both intestines. I did have a small local infection post op too.
Posted 9/12/2007 1:28 PM (GMT -8)
For my entire 16 yrs, my main problems have been with my perianal crohns skin tags which were mistaken for hemmies and they "tied" them off (banded them) while they were in a serious flare, they've remained flared ever since and my colon has also been in a constant flare the entire 16 yrs as well....so I guess for me, my biggest complaint is not being able to reach a full and total remission.

:)
Posted 9/12/2007 3:01 PM (GMT -8)
pb4,
perianal crohns skin tags...what are those?
sounds like something i have but im not sure....
thanks,
m.
Posted 9/12/2007 8:13 PM (GMT -8)
obstructions and, of course, accidents in my underwear. ;-)
Posted 9/12/2007 8:47 PM (GMT -8)
I've only been dx since early 2006 had symptons for about 2 years before so I havent had it nearly as long as alot of you, but my biggest complications have been no remission in colon since dx'd and severe joint pain mostly in knee's and wrists.
Posted 9/13/2007 6:57 AM (GMT -8)
Inflammation, obstructions, fissures, fistulas, abscesses...... I've had it all, but thankfully only minor joint pain. I've had 6 resections and only have 250 mm of small bowel left. I take a B12 shot monthly, but so far that's been my only problem.

You do what you have to do, even if that means surgery. I've been in the hospital over birthdays, anniversary's, and just about every holiday over the years. You'll be okay, no matter what, just don't give up, keep on fighting.

Right now, why don't you make an appointment with your GI and see if he'll put you on prednisone temporarily to get you over this acute phase? You won't necessarily end up in the hospital, it sounds like you're controlling things well with the liquid diet and pain meds.
Posted 9/13/2007 8:27 AM (GMT -8)
I only go to the ER when my pain meds don't work. If I am in so much pain that even percoset doesn't help, I head to the ER. Hope that helps.
Posted 9/13/2007 8:54 AM (GMT -8)
I'm concerned with what's going on with you. It sounds like you need to get to your doctor ASAP. I guess it depends on how severe your symptoms are, but you sound pretty sick.

My biggest thing is arthritis with its pain + nerve pain. And severe fatigue.

I hope you have a happy anniversary in spite of being sick. -Joy

After rereading, I think I missed the point of the question.  I was thinking extraintestinal symptoms instead of complications.  Obstruction and fistulas come to mind.

Posted 9/13/2007 10:14 AM (GMT -8)

nazeha :)

This link will show and describe perianal crohns skin tags, it's the picture under the picture of hemherroides.

http://www.emedmag.com/html/pre/fea/features/011504.asp

:)

Posted 9/13/2007 10:24 AM (GMT -8)
I hate hate hate my perianal skin tags. My largest one will occasionally become inflammed and hurt. I wish they would surgically remove it, but doc says it wouldn't heal. My GI is hoping Remicade will clear it up/shrink it as well as heal my fistulas, which by teh way, are delightfully draining right now.
Posted 9/13/2007 11:21 AM (GMT -8)
queeniefosho :)

I hate mine too, they make me feel ugly, even though no one sees them, knowing they are there is emotionally and even physically frustrating and painful...if you look at the link I posted above at the skin tags also known as "elephant ears" mine are even larger then what's in the pic :(

Maybe someday they'll figure out a way to remove them so the area can heal.


:)
Posted 9/16/2007 3:59 AM (GMT -8)
My biggest problems have been accidents and really really smelly gas - emitted while I'm sleeping - my hubby is really irritated by it! Oh, yes, I've modified my diet as much as possible (no corn, no soy, no dairy, no beans, no gas producing vegetables), but it nearly leaves me nothing to eat!
Posted 9/16/2007 10:24 AM (GMT -8)
Like most, I've had it all, except for fistulas. I think my main complaint would be, never achieving remission. Plus the fact
that the disease is progressing aggressively to other areas of my GI tract. It's like a run away train right now.
My biggest pain issue, was severe pancreatitis (caused by 6mp). I have had obstructions, resections, kidney stones,
but nothing hurt like that pain. It felt like everything in my chest & abdomen was being crushed, and no meds seem
to help. I would wish that on no-one....
Posted 9/16/2007 12:01 PM (GMT -8)
Hi Not sure what is going on with you now but if I were having pains that long I would go to the hosp. to get help. I used to let things go not anymore.Abcess surgery and fistula's and obstruction issues changed that for me. Hope you are feeling better by now .lol gail
Posted 9/16/2007 6:19 PM (GMT -8)
Where to start? <sigh> Kidneystones, Interstitial cystitis, Glommerulonephritis, rashes, fissures, migratory peripheral arthritis, neuralgia, gas, canker sores (aposthamous(?) ulcers in mouth). Back issues.
Yeah that completes the list. Funny, but my intestinal disease is really quite mild & I'm often in symptomatic remission. Go figure..

Sincerely,
Matthew
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