Frustrated and sad

[Layla123]

Hi I just happened to stumble across this site while searching for my symptoms on google and noticed people shared their storys. I was wondering if anyone has the same problem as me and what I should do?

I have been to the doctors in and out for a year now everytime i get a blood test and everytime it comes back with nothing. so they dont do anything for me.
Ive just hit 18 so no more cheap doctors visits sadly.

I have been to a gastroenterologist and had a Colonoscopy. but it only came back with polyps which they removed and were non cancerous. since then they havnt offered any help. I recently started seeking help again as I was getting very sick again and went to another gastroenterologist. they have given me a heaps of laxitives to take to see if it will move things along but nothing is working i have even upped my dose.

I am so frustrated. I dont know whats wrong with me and it seems the docters dont either or they just dont care.
I get so tired i cant concentrate. constantly bloated, weight loss and gain all over the place, hard and sometimes painful to go to the loo which is embarrassing if im at school. the pus and blood scares me. I feel very sick after i eat meals. sometimes certain meals set it off but i cant pinpoint a certain ingredient it might be such as gluten or sugar.

Has anyone else had these problems? what should I do? what might I have?

 

[lolly]

Hi layla,
I suffered for four years before i got my diagnosis, and i also saw many many doctors who didn't take me seriously. I know that it's expensive, but don't give up on searching for the right doctor and a correct diagnosis. You will find a doc who cares and will figure out what is causing you to feel so ill! Maybe try looking at the doctor directory on this site?
I wish you the best of luck, and am sending love and light your way!
Hang in there.
Hugs.

 

[Trysha]

Hello Layla
Welcome to the forum.
Sorry to hear you are having difficulties in getting diagnosed.
It is of concern to note that you have been getting pus and blood in your stools, this is certainly not normal.
You need a really good GI specialist on your side, don't give up looking .
Have you had blood work analysis, Vit B12 levels, Ferritin among others, these tests help to define problems.
There is a subforum on here for Undiagnosed Problems
---take a look around and you will find all kinds of helpful information.
You will no doubt hear from other members with their advice.
Feel better soon.
Hugs and best wishes
Trysha

 

[David]

Hi Layla and welcome! I'd like you to clarify your symptoms:

1. You have blood in your stool? If so, is it bright red or dark in color?
2. You have pus in your stool?
3. Do you have constipation, diarrhea, or normal stools?

Other questions:

4. Did they do biopsies when they did the colonoscopy? If so, were those normal?
5. ALL blood tests were normal? Nothing was even a little off?
6. Do you have ANY other symptoms, they don't have to be digestive related. Even weird rashes or tingling or numbness, etc.
7. Are you on any supplements?

Please answer those questions which should clue us in a little more.

 

[Layla123]

Thank you for your support its nice to know there are others out there that do understand

also to answer yours questions
1. You have blood in your stool? If so, is it bright red or dark in color?- bright red
2. You have pus in your stool? yes its yellow
3. Do you have constipation, diarrhea, or normal stools? constipation mostly but then bouts of diarrhea never have normal stools

Other questions:

4. Did they do biopsies when they did the colonoscopy? If so, were those normal? biopsies came back normal I think they didnt really tell me much only that It wasnt cancerous
5. ALL blood tests were normal? Nothing was even a little off? my iron is often low in my bloodtests, also liver function or something to do with that is down not so much its serious though
6. Do you have ANY other symptoms, they don't have to be digestive related. Even weird rashes or tingling or numbness, etc. fatigue, I am very tired and fall asleep in class often
7. Are you on any supplements? I take doperidone before I eat for nausea although it doesnt really help at all, normacol in the morning and lactulose also trying the phloe tablets

 

[David]

Hi Layla,

With your symptoms, I would speak with your doctor and request that they do some sort of test to examine your small bowel to see what's going on there. Examples of such tests might be a capsule endoscopy, CTE, MRE, or small bowel follow through.

You may want to discuss them running blood tests to look for inflammation and a stool test such as [wiki]fecal calprotectin[/wiki] or [wiki]fecal lactoferrin[/wiki] if they haven't done any of those.

A colonoscopy doesn't reach far into the small intestines and something may be hiding in there.

We also have an undiagnosed club full of amazing people you may want to connect with. They understand what you're going through.

Demand the care that you deserve.

 

[Angrybird]

Hi Layla and welcome to the forum, I am sorry to hear that you are having a tough time right now I can only agree that further testing needs to be done so really push your doc about this.

I hope you can get some answers on this soon, pls keep us updated on how you are getting on.

AB
xx

 

[Keepingfaith]

Hello! Welcome to the forum

Getting a diagnosis is one of the hardest battles with this disease. A lot of conditions can mimic Crohn's like Celiac, UC, vitamin deficeincies, Microscopic colitis, bacterial infections etc. A lot of people on the forum get diagnosed via colonoscopy since biopsies are the best way to DX Crohn's. Maybe you could discuss getting a pill cam? It sounds like you could have Junior Polyposis.. Was this discussed with you?

http://www.clevelandclinic.org/registries/inherited/jp.htm

Like previously mentioned, the undiagnosed club is full of supportive people! Welcome to the forum & I hope you get a DX so you can get onto the road of feeling better.