Feeling a little lost at the moment....

[-Pleiades-]

Hi All, I'm feeling totally lost at the moment and I don't know what to do. Here's a little bit of my history. About 6 months ago I took myself to hospital with really bad pains in the lower right hand side of my stomach. The hospital couldn't figure out what was wrong with me, ruled out all the major things like appendicitis and sent me home.

I made an appt with my GP and went to see her, over the course of a few months my symptoms got worse.....gut pains, dirrarhea etc. I had blood tests done, my IgA levels came back low as were my zinc levels. After eliminating about 101 other problems through drugs and whatever else I was booked in for a endoscopy and colonoscopy. This was about a 5 weeks ago.

Results came back with a stomach ulcer up top and an imflamed and swallon small bowel.

I go back to my GP a fortnight later with my symptoms getting worse and worse. She has a chat to the gastro doc and he *thinks* it's Crohn's and puts me on 37.5mg of prednisone for a week then down to 20mg after a week. I wasn't able to get in to see him for another 3 weeks so I stay on the prednisone and it takes the edge off my symptoms and pain but doesn't completely remove symptoms.

In the meantime I'm having flare ups every 3 or 4 days and it lasts for maybe 2 days. Everything I eat goes right through me and causes pain so I pretty much fast for that time and I get "better" just to get un-better again.

So all this brings me to a couple of days ago when I see the gastro doc and he said after thinking about it and reviewing my case he doesn't think it's Crohn's. His reasoning was that my bowel did indicate some inflamation, but not enough and because my symptoms didn't completely disappear because of the prednisone.

He is thinking it's more some kind of allergic reaction to *something*. Possibly atopy. He said to make a diary of everything I eat and my bowel movements for the next 2 months then go back and see him. But the thing is my food habits haven't changed in the last 2 years.

But it just doesn't sit right with me. After reading everything I can on crohn's and reading people's experiences on here it just seems to fit. I really hope it isn't crohn's but I don't know what else it could be with these symptoms.

I was looking forward to going to the doc and him saying "take two of these a day and you should be feeling better" but now I have another 2 months of this pain and I don't think I can handle another 2 months of this, it's making it really hard for me to function on a day to day basis. I just don't know what to do.

I'm sorry for such a long winded post but I just don't know what to do at the moment and was hoping I could get some guidence off here.

Thanks for listening.

 

[D Bergy]

See a Gastro specialist. I dinked around for a year and a half with two different GPs.

Went to a specialist and was diagnosed in a month. No need to suffer longer than you have to.

Good Luck

D Bergy

 

[Cara Fusinato]

I second that. You need another opinion -- one from a really good GI Doc. Do you know what atopy is? It's hypersensitivity, an extreme allergic reaction. That is possible, but to what? Gluten? That's a common irritant. One thing that may help your irritated system is to remove solids for awhile. During my first flare-up, I drank ensure and ate soup and pudding. I have the Crohn's with strictures so it prevented blockages in my really inflamed intestines. And they did settle down with time and a proper care routine. Make your GP refer you NOW as an urgent situation and have a GI doc do a full work up on you.

I hope it isn't Crohn's, for your sake, but welcome here in any case.

 

[old hat]

Celiac Disease is a possibility. It is not uncommon for Celiac to be misdiagnosed as some other chronic GI condition like Crohn's Disease or IBS.

 

[-Pleiades-]

Thanks for the replies.

I did see a specialist on tuesday, a gastroenterologist (same as a GI I assume?) I got a referal to see him after my GP couldn't help me anymore, it just took me a little while to see him, but he talked with my GP over the phone and he was the one who originally thought it was crohn's and put me on the prednisone then when I went to see him on tuesday "after some consideration and looking over my notes again, it's not crohn's"

"Do you know what atopy is? It's hypersensitivity, an extreme allergic reaction. That is possible, but to what? Gluten? That's a common irritant."

Coeliac test came back as negative, they tested for that when they did the endoscopy. I suffer from bad dermatitis and can't touch foods such as any kind of meat and things high in acid and well just about anything really. That's been one good thing about the prednisone is it's cleared up my dermatitis. I suffer from bad sinus problems as well - hayfever etc and had severe eczma as a child. I've always had allergies, but as far as I know not from eating anything. Like i said before my diet hasn't changed for a loooong time and these gastro problems started a little under 6 months ago and I didn't change anything to cause these problem.

What is ensure? I'm from australia so I think some things get lost in the translation :S When I'm having a flare up I basically just don't eat, caused me too much pain. If I don't eat it passes in a day or so, or if I do eat takes a few days, but I eat only basic foods, I learnt my lesson from that one. It was a friends birthday dinner and I was in the middle of a flare up and I just thought "sutff it, I'm not going to let this stop me from enjoying myself" and it nearly killed me, I thought I was going to die later that night.

"I hope it isn't Crohn's, for your sake, but welcome here in any case."

Thank you, me too. Though after my GP spoke to the gastro doc and he said Crohn's I read up on it and accepted the diagnosis and what was going to be needed to be done help me get better. Now everything is up in the air again. It felt good to finally know what was wrong with me after so many months of pain and to think treatment was on the horizon now I've taken 100 steps backwards and back to where I started from, not knowing anything. It's so fustrating and depressing, like I said I don't know how I'm going to get through the next couple of months if things go on like this.

 

[old hat]

What is ensure? I'm from australia so I think some things get lost in the translation :S

It's a brand of meal replacement drink. There are several brands of these. I don't know if Ensure is available in Australia but I am sure some brand of meal replacement drink is.

 

[Mazen]

I suggest you see another GI for a second opinion. Good Luck

 

[Kev]

Lost? An all too familiar feeling on this site. you are not lost, tho. You aren't sitting back waiting for a 'eureka'. See your doctor, get a referral to another gastro specialist.. Just don't pin your hopes that he/she will say it's Crohns or another form of IBD.. It may not be. I would suggest that, while waiting for an overal diagnosis, you and your doctor work on the 'definites'.. i.e. the ulcer.. As for the pred treatment I myself am on pred.. 40 mg, then a taper in 2.5 mg decrements per week. 1st time I was on it, it worked like a charm.. I went off it, but within a month was in the midst of another major flare.. this time it (the pred) isn't working (at least not so far).. I'm not a doctor, don't think my experience with pred is all that atypical.. just wouldn't say that my body's failure to respond to the pred makes my pre-existing diagnosis go away.. Not sure what rationale your GI used in making a determination that it isn't crohns (or something simliar). doesn't read from what you wrote/described that it is an open & shut sort of scenario. all things being equal, doctors are only human.. this GI may be wrong. Or not. you really need to see your GP, get a 2nd GI opinion, and not automatically defer to a doctors opinion.. That is what you CAN do.. Fight for the 'correct' diagnosis, OK?