Crohn's Disease Forum » Your Story » Tried everything, Is it time to insist on surgery?

08-25-2015, 07:25 PM   #1
Join Date: Aug 2015
Location: Charles Town, West Virginia
Tried everything, Is it time to insist on surgery?

I was diagnosed with crohns 17 years ago and had been pretty healthy taking Asacol & Apriso with only a few mild flair ups until recently.
In the past 6 months things have gone downhill rapidly. I had 2months of diarrhea, fatigue & cramping before I went to the gastro. They prescribed 40mg prednizone and informed me that my last colonoscopy (&endoscopy, my first) that my small bowel now showed crohns involvement. They suggested that I also start on Remicade.
After 2 weeks of decline (and an increase of the prednizone to 60mg) I was getting an obstruction so they hospitalized me for a week. They put me on an liquid only diet, cleared the blockage, did IV steroids & antibiotics.
After doing a MRI they told me I have fixed strictures connecting the small and large intestines. They said it wouldn't go away but they wanted to try and reduce the inflammation and stop it from spreading.

On the 6th day at the hospital I started feeling a little better so they allowed me to eat some solids (this only lasted 2 days because I got very sick again after getting home and I had to go back on liquid only) its been 6 weeks now still on the liquid only diet.
I'm still on 60mg prednizone (having all kinds of side effects from it and each time I try to tapper down symptoms worsen), I've started on the Remimcade and my next infusion isn't until September 11 (my 3rd treatment & 6 week dose), I've taken 2 weeks of methotrexate & been on LDN for almost 3 weeks.
After all of this, I have not seen any improvement.... I'm taking Ocycoden & levsin for pain which neither is helping AT ALL and zofran & fenergin for the naseaous.
I know they don't want to do surgery but how long do I have to feel like this before they will just remove the diseased bowel?
Has anyone been through this? Any advise or questions I should ask my doctor. I have an appointment tomorrow with my gastroenterologist.
I also have active limited scleroderma (morphea) which is active and no treatment is helping and I'm being seen by a specialist at Georgetown university. Last week It was recommended that I also find an IBD specialist so I have an appointment in a few weeks at Georgetown for that as well. I'm tired of the waiting and I need my life back, I'm not able to do anything and have been in so much pain for so long.....
08-25-2015, 09:54 PM   #2
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Join Date: Nov 2012
Location: El paso, Texas

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I am so sorry that you are feeling so bad. From what I understand you are on the loading dose. I suggest that you give remicade a chance. For some it takes longer to see full effects. Maybe a higher dose will work better. I hope your appointment goes well and your Doctor can help. Sending Hugs and Support your way.
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
08-25-2015, 10:27 PM   #3
my little penguin
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Join Date: Apr 2012

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For Ds it took all three doses plus a week or two for remicade to kick in.
Good luck
DS - -Crohn's -Stelara -mtx
08-25-2015, 10:33 PM   #4
Join Date: Aug 2015
Location: Oakdale, Minnesota

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With crohns it's never an easy fix I would talk to your gi about all your options. Surgery during a really bad flare might not be the best idea maybe there waiting to get it a little more under control. Waiting to feel better is so hard I feel you there, just keep communicating and I always make a list and number them priority for my doc to help. Hope you get things under control soon!
08-30-2015, 03:57 PM   #5
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Welcome to the community. I'm so sorry to hear of your struggles. My heart goes out to you.

I'm communicate how you're feeling to your GI. Ask them, "At what point do you suggest I have surgery if Remicade isn't doing it's thing?" and see how you feel about that answer and go from there.
It's good to be back

Crohn's Disease Forum » Your Story » Tried everything, Is it time to insist on surgery?
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