Confused Teen with crohns

i was diagnosed with crohns when i was 12. I'm 17 yo now and still suffering. Ive had surgery to remove the inflamed area when i was 13 however a year later i started experiencing symptoms again. I've tried sterioids and other medication but nothing was working. Recently my symptoms have been getting worse but the doctors think its not my crohns. I have to go dirrhea about 6 times a day after anything i eat even if its juice or candy. My doctors are really confused of what it could be and im tired of going through this everyday. I barely hang out with my friends since i always have to run to the bathroom which is pretty embarassing. Anyways if anyone has these symptoms or know what could be a possible solution, reply back

Hi Lucy and welcome! I'm really glad you joined and hope we can steer you in the right direction. Some questions:

1. WHY do your doctors not think it is Crohn's Disease? Are all your tests coming back normal? If so, what tests have they performed lately?

2. Other than the frequent diarrhea, do you have any symptoms?

3. When you had your surgery, what area of your intestines were removed and do you know how much they removed exactly?

4. Are you on any vitamin or mineral supplements?

5. What, if any, medications are you on?

6. Have you tried any dietary changes?

If you answer those questions I bet we can start to point you in a direction of research or two

Again, welcome!

Hello Lucy and welcome to the forum I can only second all of David's questions above, hopefully with your answers we will be able to help you get something sorted.

Pleased you have decided to join.

AB
xx

thanks for replying,

so here are some answers to your questions

My doctors dont think its my Crohns since i had another colonoscopy last year which showed up normal, i also took many blood tests recently which also turned out to be normal and ive also taken those barium test where you swallow that drink but it also came normal. So they thought it could be a food allergy since i get bad stomache aches right after i have a meal. So they tested for Celiac Disease and Lactose intolerance which came out normal as well. So they told me to try taking out gluten so itried that for a week but there was no change in my stomache, i still had bad pain.

Other symptoms include severe stomache pains to the point i cant walk to the bathroom or anywhere else. Also i'm really tired and have no energy since the pain is really bad. Ive been hospitalized twice last year since i had a bad bowel abstruction and i also had a infarct in 2010.

They removed a small part of my ileum in my small intestine i think

I was on iron pills and b12 since i was close to being deficient. But ive stopped taking those

Well Lucy, it must be quite annoying to see all these results coming back as normal when you have to cope with these symptoms without knowing what triggers them...

I can only wonder one thing from what you said, I know you did the SBFT with the barium which came back normal but has your doctor consider a pill cam maybe (If so, ask for a dummy pill test first as you mentioned you had a bowel obstruction recently)? I know that my barium test was not showing much even though I had ulceration in my duodenum and ileum. These ulcerations could be seen with the pill cam exam. Maybe that could be something to consider?
Have you seen the result of your blood test? Sometimes, people don't go off the chart with their blood test and well, even if the parameters show up as normal, sometime you can have inflammation an active disease despite that fact. I've often been within the normal and my doctor (GP) would tell me everything was fine until I pushed to get more exam done cause I knew I was too tired and something had to be going on. I assume that your doctor knows better than I know... but from the symptoms you mention... it looks like something is acting up and I do hope that you are not just being "misdiagnosed" because it does not show up like crazy. That's just my two cents as I have seen that pattern when the tests say you should be healthy... but you do know that you are not.

Are you supposed to have an appointment with your GI anytime soon?

Ive actually never heard of the pill cam test but it sounds like something that could show whats wrong with me. I'm meeting with my GI tomorrow and hopefully she'll have an idea of what to do because i am so confused with all the symptoms that i have and there are endless possibilities of what could be wrong. I told my family doctor to show me my results but he said everything was normal but i clearly know something is wrong with me so hopefully my GI can help me out but whenever i do go to her she just tells me to take more tests and stool softners. For this reason i rarely make appointments with her since i am never getting any answers

Hi Lucy,

Be careful about stopping taking the B12. I would suggest that you get tested to make sure your level is above 500pg/ml.

You should look up an at home fecal transplant. Hopefully the clinical ones will get approved soon. It is amazing how many people they have helped!!

sorry Lucy! I understand about the daily diarrhea and how tiring it is. I pray that you have an insightful GI appointment and get as many tests as possible done to get answers/relief. All my best to you!