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Crohn's Disease Forum » Support Forum » Dont know what to do...have some questions


10-12-2010, 05:37 PM   #1
kayvank
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Dont know what to do...have some questions

So i was diagnosed back in March with Crohns. Im currently on 60mg of Pred a day, everytime i start to taper it down i seem to flair up. Ive been in the hospital 4 times since june and to the ER 2 other times, but they sent me home cause i had no obstructions. The 4 times ive stayed in the hospital, was because of a partial obstruction. My Crohns is localized, mainly where my small and large intestine meet; i believe its the ileum cecum valve (dont know if thats the correct spelling). Im also taking Flagyl and on 100mg of 6mp. However, it doesnt seem to be working out for me.

The questions i have are regarding surgery and cimzia. GI doc said there is a 90% chance im going to have to have surgery in the future. I am currently waiting to be tested for TB and they did a chest Xray on me; guess they want to make sure im ok before i start cimzia. But regarding surgery--If i do get it done it will be in December. Will i be on any medication afterwards?

I am really starting to consider surgery, because i feel like crap everyday. I dont really have D but i always have a lot of stomach movement; been trying to follow a low residue diet. Havnt had any pain lately since my last hospital visit, but i just got out a week ago. Does anyone else feel like they are gonna throw up throughout the day? I dont know if its the meds or just the crohns.

Let me know what you all think.
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Crohns Disease
Diagnosed: March 2010

Surgery:
Orginally Dec 13, 2010, but due to perforation and abscess I had it done Nov. 27
(Ilium cecum resection/appendix and abscess removed)

Currently Taking:
100 MG 6MP/day

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10-12-2010, 09:03 PM   #2
Jennifer
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I was still taking medication after my surgery (Asacol and 6MP) and tapered off Prednisone before the surgery. The reason why its a good idea to continue taking medication is to keep your Crohn's in remission. Surgery isn't a cure so its good to continue taking medications that suppress your immune system since its overactive.

Some people have mentioned nausea due to Crohn's. I don't experience it that often as one of my symptoms.

I'm sorry that you aren't feeling well but welcome to the forum.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
10-13-2010, 05:22 AM   #3
DustyKat
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Roo has been on a low dose of Imuran since her surgery 4 years ago, she has been in remission since then.

Dusty.
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Mum of 2 kids with Crohn's.
10-13-2010, 12:19 PM   #4
samsite
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When they were taking me of the steroids imuran was the only thing that worked long term. It took months to have any effect however and there are quite nasty complications/side effects (I had none)

There are a lot of pro surgery people on here but I would avoid this for as long as possible! You can always change medication, you cannot put bits of bowl back in.

Be lucky,
Sam
10-13-2010, 12:26 PM   #5
Jennifer
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There are a lot of pro surgery people on here but I would avoid this for as long as possible!
I haven't seen anyone on here who's "pro" surgery. Surgery will always be a last resort when medication and other treatments fail. Many of us felt better after our surgery but that doesn't mean we're pro surgery, its just that surgery was needed to survive.
10-13-2010, 02:34 PM   #6
DustyKat
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^^^^ Ditto.

Roo only had surgery because there was no other choice. If she hadn't had when she did she would be dead. I know I am positive about her outcomes and I guess this is the reason why.

Dusty.
10-16-2010, 06:19 PM   #7
CyCrohn'sGuy
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There are a lot of pro surgery people on here but I would avoid this for as long as possible! You can always change medication, you cannot put bits of bowl back in.

Be lucky,
Sam
Not sure that's 100% accurate Sam. Many of us would not be here now if it wasn't for surgery.

Costas
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Past Meds: Pred Foam, Azathioprine, Asacol, Medrol Corticosteroids, Remicade

Current Meds: Humira, Warfarin

Surgery: 24th August 2010 - perforated Ilieum (80 cm removed)
6th November 2010 - Blood Clot in left lung due to surgery
10-16-2010, 06:29 PM   #8
Entchen
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Hi, Kayvank, and welcome to the forum. So sorry to hear about your symptoms. Re. your question, yes, I have nausea throughout the day -- not every day, but many days it's terrible. I find that ginger capsules are a big help.

Re. the last few comments: This is coming from someone new to Crohn's (6 months) and who is not currently anywhere near being a candidate from surgery, but my understanding of the current Crohn's literature is that surgery is increasingly being seen *not* as a last resort, but as a treatment option that might be better for certain people than medication alone, even if the situation is not considered an emergency and/or life threatening. Have others been seeing this in the literature as well, or can others point me to studies suggesting the opposite? Thanks!
__________________
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon

Last edited by Entchen; 10-16-2010 at 06:32 PM.
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