Where to next

[smile]

where to next

Im confused, Ive been suffering with problems for over a year now and I do believe there is something going on.

Ive had a colonoscopy, barium follow through and blood tests.

Ive just got my biopsies back and have been told they are all normal. When I had the biopsies taken I was told that there was mucosal erythema noted in the terminal ileum. So I still don't know what that means if anything. Maybe it means nothing.

I should be pleased that Ive been give the all clear and I am to a certain degree, but now Im left wondering what is going on. Im still finding it difficult to gain weight, have been having abdominal pain, just this week Ive been getting a new pain. Its below my belly button and is like a dull ache, like a strain. Ive not had that before, usually the pain is on the right. I dont know of what relevance this is, but for quite a while now my periods are really irregular. I go 6 months between them, my hormones have been checked and Ive had a scan, all have been normal. Im just at a loss as to whats going on.

Im starting to think no one believes me that Im suffering and nothing seems to be showing up.

Im losing hope of getting things sorted.

 

[Silvermoon]

Joan (Astra) might be better able to answer this one for you...but has anyone checked for endometriosis? You might want to check out her thread: http://www.crohnsforum.com/showthread.php?t=11454&highlight=endometriosis

I am kind of going through the same thing right now with endo, although I don't find mine all that painful (or maybe I do and just think it is the CD acting up...lol).

"Mucosal erythema" basically means there is a bit of swelling in the mucosal lining of the intestine - bascially...thgere IS something there...they just don't what it is...lol

Unfortunatley, there a lot of people on the site right now that are having abdominal issues and "noral" tests.... it can be very frustrating, and hopefully someone can find an answer soon for all of you....

In the mean time, try to hang in there, keep pestering the doctors, and know that we are here for moral support...

((((((((( Smile ))))))))) best wishes....

 

[smile]

Hey,

thanks for your reply. Ive never been checked for endometriosis. Ive had these problems with my periods for about 3 years and its never been taken seriously. I didnt know you could have irregular periods with it, I always thought it was painful periods with it. Ive been checked twice for PCOS by having scans done. Over the years Ive had numerous blood tests and they have always been clear.

Something needs to be done, because something isn't right. Still have no clear cut reasons to why I cant gain weight, I only gain a few lbs if I eat way too much.

Guess its back to the doctors I go.

 

[reidyjo81]

Hey
Just wanted to say sorry your having a hard time at the moment. Please don't give up and ensure your docs dont' go either. It took ages for them to diagnose me with Crohns well over a year and had all sorts of trouble. Keep your chin up and hope you get things sorted.
Jo xx

 

[smile]

I know Im asking a lot of questions, but Im just trying to get a clearer picture on things. I think Ive mentioned before that they only way I put on weight is by eating way too much and junk food. Now this may not make sense, it doesnt to me. It seems on the scales I have put on maybe 3lbs or so, but physically Im not gaining any weight. My arms/wrists are really thin/skinny and so are my legs, they look bent because they are so thin. This doesnt make sense. Can you put on weight on the scales, but not bodily? Has anyone experienced anything similar?

 

[Cat-a-Tonic]

Hey Smile, if you've gained a few pounds but think you're still losing, and you're eating junk food, you're probably just retaining water. That can happen if you eat too much salty foods. Have you tried those drinks like Ensure or Boost? They have a fair amount of calories and also vitamins and stuff, that might help you put on weight without so much water retention.

 

[smile]

Thanks for your reply, that actualy does make sense. Ive noticed that as soon as I cut out the junk and eat healthy amounts my weight on the scales drops again. So maybe it is that Im retaining water. I have tried something called build up over here in the uk, should maybe go back on it and see what happens.

 

[smile]

I feel really confused about my biopsy results now. I got my letter from my gp today and it said that they have my biopsy results and the 4 samples are all normal. Now on my discharge paper from the hospital it said I had 8 biopsies in total, so what happened to my other 4 biopsies. Ive tried phoning the hospital (the gastro department) yet there is no answer everytime I phone. Im confused as to what is going on. Has anyone else had trouble like this? I feel like there is nothing I can do until my follow up appointment.

 

[Mayflower537]

Maybe they took 8 samples from 4 different areas? Request a copy of your pathology report. Mine had all that information on there.