Crohn's Disease Forum » Your Story » Putting a Name to my Illness (new and undiagnosed member)

05-15-2017, 03:35 AM   #1
Join Date: May 2017
Location: Texas
Putting a Name to my Illness (new and undiagnosed member)

Hello, all! I'm a new member and am currently waiting to hear back from some results hopefully this week. I really just want to rant because I have been so sick and the stress of not knowing is actually driving me insane. So here is my story.

Growing up I was always healthy, until the age of 15 when I became so ill that I lost 30+ pounds within a month. after a couple of months of listening to my GI Specialist tell my mother that it's just an eating disorder he finally ran some tests and I got my gallbladder removed due to chronic inflammation and some benign tumors. From that day on, my GI health has been on a steady decline. I am now 22 years old and have had three severe cases of c.diff (in the last 2 years).

And what brings me here is that two months ago, towards the end of my junior year in college, everything kind if blew up. One Friday, my whole body ached and felt like it was weighing me down and two days later I ended up in the emergency room due to pain so severe I either threw up or passed out if I moved a certain way. They sent me home with a diagnoses of simple ovarian cysts and a prescription for Tramadol. This of course angered me beyond belief because they wouldn't take me seriously at all. At my follow up I found out that I actually had a couple of infections and was immediately put on some antibiotics. My illness progressed to a point where I had no appetite but if I tried to eat anything I would get sick to my stomach. My pain had worsened which I thought was impossible and I also developed a fever. One night the pain became so bad that I ended up back in the emergency room and guess what! They stamped a diagnosis of gastritis on me and sent me on my way. By this time I was beyond fed up and went to see a GI Specialist in town. I've gotten abdominal ultrasounds and an x-ray (which came back normal) and an upper endoscopy (there were clear signs of irritation and redness in the esophagus and stomach and my small intestine was inflamed with an increase in some cells typically seen in crohns). I then had to do a blood test to test for IBD and a gastric emptying test to rule out gastroparesis. I am currently waiting for those results and it has me antsy because everything else has been ruled out.

Currently I'm on 8mg of Zofran and my symptoms include:
-weight loss
-severe abdominal pain
-diarrhea with some blood (it was so bad that it was giving me flashbacks to the colonoscopy prep I had to do over a year ago)
-complete loss of appetite (I don't even remember what hungry feels like)
-vomiting (with blood) anytime I eat
-extreme nausea
-fatigue so bad I slept for close to 20 hours in one day
-some bowel incontinence

I honestly look like a ghost right now and I'm so anxious that I can't concentrate on anything. I'm trying really hard to stay calm and not show how scared I am in front of my mom and friends because they are so worried, but honestly I've cried more this last two months than I ever have before. I had to drop out of all my classes due to this illness because I missed way too much and really just need to focus on my health. It was the hardest decision I've ever made (because of the consequences on my gpa and financial aid) but after missing one test because of severe pain and sleeping in the middle of another I knew I had no choice. Sorry for this really long rant, but I've been scared out of my wits and I can't really talk about it with anyone without seriously worrying them. I feel like I'm losing my mind every time a test comes back fine and it feels like no one believes me.
Thanks for listening!

05-15-2017, 05:14 AM   #2
Forum Monitor
ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I am sorry for all you have been through. Keep fighting until you get an answer. You know your body better than anyone else. Let us know what you find out
05-15-2017, 10:59 PM   #3
Senior Member
DougUte's Avatar
Join Date: Jul 2010
Location: Kaysville, Utah

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Jess, I would recommend that you at least let your mom know what is going on. You are going through a lot right now, and moms are usually pretty good at providing support that is needed. You are blessed to have a mom and friends who are concerned.

But you are right to post here. We understand. I hope you get answers from all this. Let us know what you find out. It sounds like a very severe case to me.
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
05-15-2017, 11:24 PM   #4
Forum Monitor
cmack's Avatar
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi jlynn,

I think you need another opinion. If you can't get one, keep asking questions. Read up on it and ask the doctors things relevant. You are your own best advocate.

Kind regards,

05-16-2017, 06:05 AM   #5
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Hello and welcome to the forum, I'm really sorry to hear of everything you're going through but I'm glad you've found us, you'll find lots of people here who are going through similar and you'll get lots of support and advice.

Unfortunately its pretty common for people with IBD to first be diagnosed with other things, in fact, there are a lot of similarities between me and you. My symptoms first started when I was 15 and I myself was questioned about eating disorders on multiple occasions, my symptoms escalated at university and I also got misdiagnosed as having rupturing ovarian cysts.

I hope you're not waiting too much longer for your test results, these are often the most difficult times but it sounds like you're close to getting answers at last.

If your diagnosis is confirmed to be Crohn's, then you'll at least be able to start on some proper treatment, it may help you to have a look at the treatment section of the forum so you can see the kinds of things that are available as some doctors will give you a certain amount of choice in what you receive.

Let me reassure you that you are not loosing your mind and that we believe you and that it is ok to be scared and to struggle. This is a lot to take in and it will take some time to get your head around it and get used to it and there's no shame in that.

Don't be afraid to come and questions about anything, we're all in the same boat here and we have all been where you are now. We all understand how scary this is and we all know the impacts it has on your wider life, so we will always do our best to help and support you , even if we don't have the answer to a specific question, we will at least try to point you in the right direction and we will always provide a listening ear.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-16-2017, 07:32 AM   #6
D Bergy
Senior Member
Join Date: Apr 2007
I would guess by your symptoms that one infection you have, and there may be more than one, is H-Pylori.

It causes a lot more problems for some people and it doesn't take an amount detectable on tests.

I have had trouble with this before and it is a common infection.

I would try treating it and see if you improve. Manuka Honey is supposed to kill it. There is also a lot of fake Manuka Honey out there so be careful where you get it.

Good luck.


Crohn's Disease Forum » Your Story » Putting a Name to my Illness (new and undiagnosed member)
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