My story

[minnietoty]

my story

Hi, I'm a 33 yr old female. Since 2007, i have been suffering from constant diarrhea, weight loss, and severe abdominal pain. I've had 2 colonoscopies which were very clean. So, were the CTs and MRIs. even the crps, esrs except for the calprotectin which was high at that time. My doctor told me that all symptoms go for crohn's but there is a no clear cut diagnosis. I've had flare ups on and off since then. Pain has been recurrent for the last 3 years but without any improvements. As the biopsies showed mild infectious ileocolitis, i was put on antibiotics. After that, my GI changed to pentasa which I couldn't tolerate because of GERD, gastritis and dudonitis and he switched to Salofalk 4x2 for 1 year and a half. Meanwhile, i used to have acute flare ups for which i was given antibiotic injections until the flare up withered.
The real flare up started 4 months ago with severe D. I was put on pred 40 mg which was a miracle. Then, my doc decided to taper it off. Whenever the dose was reduced to 20 mg, i flared up. This happened twice. Now, i'm on 40 mg pred, 150 mg azathioprine and because of elevated white blood count, i'm taking an antibiotic. However, i flared up!!!!!!! In addition, the D has turned into severe C. I'm now constipated and don't know what to do???? The pain is horrible and all the med doesn't seem to work although these were effective a week ago. Does anyone have a clue what's happening and how should I act? Thanx

 

[carrollco]

I have had unresolved diarrhea for twenty years. They told me it was 'nerves' that I had an anxiety disorder and prescribed psych meds. Five years ago when things got really bad I drank pepto bismal and it really helped get me through. I had a colonoscopy four years ago and it was clean.

Last year started another flare up. Only this time pain was involved. I kept telling myself there was nothing wrong, that my colonoscopy was clean, and it was all in my head.

After a bout of blood (just a few weeks ago), I called my regular doc who called a GI and they got me right in for a colonoscopy. I have five ulcers, one at the rectum, two in mid colon both sides, and one at the entrance to the small bowel. My biopsy's came back Crohn's.

I wonder if I've always had it or did my irritable bowel diagnosis just turn into Crohn's. I don't suppose anyone has the answers, but I think back on all those times I went to work feeling like death, weak and shaky, miserable and sick, and wonder.

As far as pain goes, I've learned to live with it. When it gets really bad I take three Tylenol, a hot bath, and then a heating pad on my tummy. It doesn't take away the pain, but it does take the edge off. I'm reluctant to use pain killers.

Right now I'm on Lialda but am considering Humira. Prednisone scares me to death as my mother in law has been on it for Valley Fever for five years and she does some really nutty things.

Eh, I did take myself off all dairy and am much better. I don't eat any bread or wheat because that always makes me flare up.

I wish I had better answers for you, but Crohn's seems to be different for each person. I just know that all my tests came back clean until this one.

 

[mrjoe]

Hi Minnietoy,

All people react differently to medicine, but I don't think either the prednisone or azathioprine normally cause constipation... What antibiotic are you on? I wouldn't guess a clue as to your problems so I strongly suggest you call your GI Doctor.. He will be the best to ascertain what the issues may or may not be.. I'm sorry you're in pain and please go to the ER if your pain doesn't ease.. something is wrong here..

/joe
dad of a son with Crohn's..

 

[archie]

Hi it sounds like a possible blockage and infection if it continues I'd go the hospital especially if you become nauseous or sick. Hope you feel better soon

 

[minnietoty]

Hi Carrollco, MrJoe, and Archie,
Thank you very much for your replies. This really helps me and makes me feel I'm not alone. I tried taking a gastro-regulator and things don't seem to work very well. I'll wait and see, especially, that my doctor wants me to go 10 mgs down in pred. Whenever i taper it off, I flare up.

 

[Astra]

Hi Minnietoy
and welcome

Pred can/may have the ability to constipate but also masks other symptoms. If there is scarring from years of inflammation, there could be narrowing too, if you start vomiting go to A&E asap, you could be blocked. Also don't be tempted to take otc laxatives like Immodium. These will just back you up even further.
I believe the secret to Pred is high doses for a few months, for example, I was on 50mg for 2 months, 40mg for 2 months, then started to taper by 10mg every month. All in all I was on it for nearly 11 months and it has healed me nicely. I have no pain at all now, and I was severely infected with a blockage and in hospital for a week.
Give your doc a ring to be on the safe side.
lotsa luv
Joan xxx