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September Roll Call
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Louise_WebMD_Staff posted:
Roll Call! Sounds like school, doesn't it? Sorry--especially to those of you who have been out wearing your wallets out to buy school supplies or who had traumatic school days.

In any case-let's get to know each other a bit better-whether a long-time member or brand new to the community:

Name or name you go by in the community:
IBD: (Crohn's, Colitis, undiagnosed)
Meds/treatment?
# of years you have had an IBD:
Reply
 
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OyWithThePoodlesAlready responded:
1) Ali
2) Crohn's
3) 25mg prednisone - trying to taper again - go down to 20 Friday - yay!
4) um... I think 5.5 years - got a probably dx 5.5 yrs ago - was suppose to go back for a followup colonoscopy after 6 months but in the mean time went gluten free for upper gi symptoms (crazy bloating with heartburn with any exercise and after I ate to where I couldn't eat more than 2xs a day) and the lower gi pain went away with it until last year so I didn't go back for that 6 month followup until last April
 
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hannahleigh89 responded:
Hannah

I guess UC? I'm still not certain. It's gone back and forth too many times.

As far as meds go, I'm not currently on anything for UC. I take birth control, a prenatal vitamin, potassium, Aciphex, and Celexa. Just finished a prednisone taper. Recovering from a total colectomy I had on July 15th.

I was diagnosed about 5 years ago, had problems for a couple of years before that.
 
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mindyj1971 responded:
Hello all!

1. Mindy
2. Crohn's Disease
3. I've had several surgeries, including a temp colostomy in March of this year. Am back on Remicade, STILL trying to taper off of the prednisone, Pentasa 4000 mg daily, potassium 40 meq daily, prozac 40 mg daily, birth control pill, lots of "as needed" meds like...valium, phenergan, vicodin etc.
4. I was diagnosed on September 11, 2008, so my 2 year anniversary is right around the corner:(

Currently waiting to see if I can successfully taper off of the prednisone. So far, NO GO! Can't get past 20 mg without crashing!! GGGRRRRR. If I can't get off of it then my surgeon has said that he may need to remove my colon and rectum:( Time will tell, I guess.

Hugs to all-Mindy
 
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sheba_q responded:
1. Sheba
2. UC
3. Dipentum, birth control pills, vitamins, probiotics, diet modification
4. Got sick Dec 1992, diagnosed Feb 1993
 
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cook1958 responded:
Cook1958
UC
asacol, robinol, folic acid, multi-vitamin, cardizem
8 years ago I was DX. I have been in remission for 2years
 
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shanna_02 responded:
Shanna
Microscopic Colitis
Apriso, Gastrocrom, and Hyoscyamine
My symptoms started in the summer/fall of 2009 and was finally diagnosed in May 2010.
 
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KDVandy responded:
Karen (36 yrs old)
Microscopic Colitis, Fructose & Sucrose Intolerant
Entocort EC 9mg, Protonix 40 mg,

Undiagnosed for more than 10 yrs with lower abdominal pain, 15-20 restroom visits a day, average weight loss of about 5 lbs a week (usually put back on while on steroids), vomiting, cramping, thinking my apendix was going to explode.. had my first colonoscopy at age 19, in 1992, the doc stated everything looked good. Had 2 more children and the pregnancies took their toll on me and my body.. aparently my colitis did not like me being pregnant. Nov 1998 had another colonoscopy.. found nothing.., doctors are giving me the idea that it might be physcosymatic.. the pain is real and the weight loss is real I tell them.. then the think my husband might be abusing me.. but not leaving any brusing.. go figure.. June 2001, I am at work and I am about to go out to the wielding shop when the pain is so unbearable I fall to my knees and my boss calls the ambulance.. The doctors check my apendix.. its ok they say... I am sent to a specialist in Spokane WA (about 100 mi away), he runs a battery of tests on me, one called a hydrogen breath test, it is positive, I am fructose and sucrose intolerant... Finially the mystery is solved... my diet is changed and I would be fine.. right...
for about a month my body was fine with the new diet, then the visits to the bathroom began again.
Another colonoscopy... still nothing... I am put on antidepressants thinking it is just IBS and nothing more... I explained to the doctor that he is wrong since my symptoms do not match that of IBS, but he said that is the only thing that made any since to him.
2006, I move to Alaska. June 2008 in about a 3 week span I had lost almost 20 lbs with the vomiting and bathroom visits,I saw my doctor and had blood drawn and I had a CT scan set up to see if there was anything wrong with my insides, everything came back fine so she sent me to a specialist in Anchorage (110 mi away).
I came for my appointment and met the new doctor and he had asked about my history. He seemed perplexed as to why none of the prior doctors had ever taken biopsies.. he told me that it was protocol with anyone who is given a colonoscopy. He told me I had to get another one and this time with tissue samples so he can see exactly what is going on.
On October 5, 2008 I was diagnoised with Microscopic Colitis (colagenous), while my doctor was on vacation.. I am still waiting for it to go into remission.. I have been on the sterioids 4 times in the past 2 years, today I picked up my 3rd bottle of the 9mg of the steroid, I am not sure when I will be able to taper down.. but at least at the moment my trips to the bathroom are down to 1 or 2 and are no longer watery.. I praise God every day for the miracle of the doctors and the work they are able to preform.

May God give you the strength to live for today, bless your tomorrow, and give thanks for yesterday.

Always know that you are not in this alone.

~Karen
 
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rednewbie replied to KDVandy's response:
Gin,
I am 42 years old, I have had crohns since 2007. I have a resection, several hernia repairs, and now I am on Imuran, lyrica (for fibro) and Pentasa, along with a variety of pain meds and other stuff! . I am unable to eat any fiber due to strictures which my diet very interesting and boring. I would gladly trade the poptarts for a fruit salad!

I recently found out.. as in on Friday I was finally approved for SS disablity after a 3 year long battle. I have no details at all. Just a phone call from my lawyer. But the battle is now over. Thank God!

Hugs to all. This disease is exhausting mentally and physically, be sure to get all the rest you can!
Hugs,
Gin
 
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momore replied to rednewbie's response:
Gary, 42 years old. Crohn's since 86, stage IV kidney failure 09. I have had a partial resection in 95 and a proctocolonoptomy in 97, now have an extreme high output ileostomy. Crohn's on remission from 97 until last week, in hospital for 6 days. GI says that I am now in flare, it is back in small intestine. Life will never give me a break!
 
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OyWithThePoodlesAlready replied to rednewbie's response:
Congrats on SS disability Gin
 
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jodi2125 replied to OyWithThePoodlesAlready's response:
Gin, congrats on SS!!! its been a long fight for you and so glad you finally won!

gary, im so sorry you were back in the hospital. man, life keeps hitting you hard. im so sorry. i will keep you in my prayers.
jodi
 
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Louise_WebMD_Staff replied to momore's response:
Awww I am sorry Gary.
 
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Louise_WebMD_Staff replied to rednewbie's response:
Yay Gin on the SSDI.

Have you seen the Bland but Grand cookbooks for people with Crohn's?
 
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kildare6338 replied to shanna_02's response:
This sounds like a rerun of my life. I honestly believe that I have had Microscopic Colitis for a number of years but was only diagnosed in June of this year. I had a colonscopy in April and was told that my problem with gushing stools and absolutely no control was due to a food born irritation. I was given antibiotics and sent home, supposedly to return to normal in a couple of weeks. Well, that didn't happen. After two months I returned to the doctor because I had alsolutely no control over my BMs and had ruined my clothing, carpet, etc. When he pulled out my chart and revisited the lab results from my colonscopy he apologized for not seeing the MC diagnosis. He put me on Entocort and I am still on it.
I tried to stop once and started Lialda with disastrous results. The thought of being out of control again terrifies me. Plus, my family has a history of osteoporosis - my mother was at a 90 degree angle when she died. Does anyone know how long one can continue to take Entocort?


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