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Crohn's Disease / Ulcerative Colitis Message Board

PLEASE help!

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Old 04-28-2011, 12:49 AM   #1
Join Date: Apr 2011
Location: Canada
Posts: 2
chipsy10 HB User
Exclamation PLEASE help!


I recently fired my doctors.

I am in constant pain in my lower right pelvic area, groin, right hip and sometimes runs down my thigh when it is severe and right butt cheek. For the most part it is constant deep burning/cramping and a stabbing pain. I also have pain in my back and at times it brings me to my knees when trying to stand.

I also have pain in my left side - but not all the time. It is the same stabbing pain and burning but not to the extent of the right. The left side only started this year and is progressively getting worse.
I get nauseous but no vomiting.
- eyes are swollen some mornings.
- low-grade fevers.
- diagnosed with gastritis 2010 and a hiatus hernia.
I just had surgery 2.5 weeks ago and dx endometriosis where they removed 2 implants on left side.
- diagnosed with GERD 2008.
- eczema currently on my hands (palms)
- typically have a lot of diarrhoea
- also have sacroiliitis

Celiac disease, H. pylori, have been ruled out via endoscopy and I had 3 MRI's. First showed 2 strictures in jejunum and the second showed thickening of the bowel in the ilium. Third came back normal. Radiologists said it is non-definitive Crohns. During my endo laporoscopy, the GI "forgot" to request biopsies from the OBGYN. The OBGYN said my bowels looked fine (yet when I asked her on my 1st appointment if she could tell during surgery if I had Crohn's - she said no, it wasn't her area.)
Anyhow, when I called to receive the results from my GI re: the non-existent biopsies, they were very defensive because I was angry. I was also supposed to have a CT scan scheduled for 2 weeks after the surgery [my surgery was bumped very last minute (I mean in gown on gurney almost had the IV in) from the 5th - the 11th.] They forgot to book that as well (my GI office didnt know the surgery was bumped).
Long story short - the day after I asked about the biopsies, the nurse said my 3rd MRI came back normal and the radiologist wrote "no further follow-up". So, I went from my GI telling me about prednisone and describing a resection of my small intestines and SBS to being told I no longer need follow-up? He wanted the CT b/c he said he wanted a better picture as the others didnt give a very good picture.
So, today I was told the CT is cancelled, next appointment is in June 20th and he wants me to go on Donnatal - he thinks I have IBS. All coming from the nurse. When I asked about the MRI's showing strictures and thickening of the bowel wall, she said she didnt know. My understanding is that IBS doesnt change the structure of the intestines.
Im not getting any medical help here. I had to wait a year to get in to the GI and 2 years later, I have only seen him twice. Im at my whits end. I dropped out of university with 2 courses to go to get my degrees, I have no social life and I am EXHAUSTED all the time.
Can I get some advice, suggestions, comments....anything..please? I feel like my life is wasting away and I have very little support. My friends have all faded b/c they dont understand.
Thank-you in advance.

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Kindworrier (06-15-2011)
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Old 06-14-2011, 05:40 PM   #2
Join Date: Jun 2011
Location: Reading uk
Posts: 8
Kindworrier HB User
Re: PLEASE help!

hey, I cant tell you any medical diagnosis but I just wanted to tell you your not alone, I am going through exactly the same thing my symptoms are alot like yours, and I had my consultant in the uk told me I needed to loose weight that was my problem, I have felt like my life has been on hold for 5 years I have finally had enough and changed hospital, and I just had colonoscopy yesterday and have been told there was inflammation and it was so painful, I broke down in tears yesterday because its been such a fight to get where I am, I hope you find some help soon hun.

Old 06-15-2011, 06:55 AM   #3
hammer 403
Join Date: Jun 2011
Location: milwaukee, wi, usa
Posts: 5
hammer 403 HB User
Re: PLEASE help!

I was diagnosed with ulcerative colitis over 20 years formed BM's with mostly blood and mucus. I got total remission by using VSL#3 probiotic and metagenics glutagenics. I began with 2 packets of VSL and 1T glutagenics per day and this didn't help. I increased to 8 packets of VSL and 8T glutagenics per day and committed to this for one month. For the next month I cut back to 4 packts/4T glutagenics for a month and now take 2 packets and 2T glutagenics per day. I experienced total remission in about 2 weeks. I now have normal bm's and no pain. Hope this helps it was like a miracle for me

Old 07-06-2011, 12:26 AM   #4
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Join Date: Jul 2011
Location: USA
Posts: 14
faefeverfan HB User
Re: PLEASE help!

Hey there. I'm sorry you're going through such a rough time. Honestly the best thing you can do is either go to the emergency room at the hospital, or find a different gastroenterologist who does something quick! I almost died through misdiagnosis and wrong perscriptions. sometimes you have to take charege! find that doctor!

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