Diagnosis Story, Questions and Help...

Hello. I'm a 20 year old male. about 5 months ago, I started getting very bad abdominal pain and constipation and bleeding. I went to the emergency room and they did an x-ray of my abdominal area and told me I was just constipated and to take Miralax. So, I did that for a week. It didn't help, I would lay in bed at night in horrible pain, with a hot pack on my left side to try and help the pain and all the gassiness I had. Then I started having fevers, ranging from anywhere from 99.0-101.4. I started getting headaches, and I was constantly physically weak, and I was starting to get chest pains and heart palpitations. I went to the ER a second and third time, and they told me that I was totally healthy, and that I had a stomach flu and "anxiety I needed to get in control of" but with no recommendations on how to do so. I went crazy thinking of things that could be wrong: I thought I might have worms or something, or some kind of cancer, I thought the worst 24/7. I went to my primary doctor two days later. He thought gastritis so he gave me Aciphex and told me to see him in a week. I had no acid reflux at this point, so I didn't get how aciphex would help me. So, not feeling any better, I went back. He could't figure out what was wrong. He did an EKG, and he did a meningitis test, and he ended up deciding it was an "odd presenting flu." So, being on Tamiflu for a little over a week, everything just got worse. I got more weak, more tired, i started shaking, parts of my body would twitch. I was convinced I was dying, and had a brain tumor and I had some kind of intestinal cancer. I went to the ER a fourth time, they did a CAT scan of my head and everything was fine and they gave me Tylenol 3 for my headaches and medicine to treat sinus infections. Two days later, I went to the ER again and they did a gall bladder ultrasound, and blood tests and another EKG and everything was fine with those. They eventually decided to do a CAT scan of my GI tract, and they found a "thickening of the ileum wall." And they told me that I might have Crohn's disease and need to get set up with a Gastroenterologist. My doctor referred me. It wasn't until February 18th that I got a consultation and this was almost on month three of me being sick. My small bowel follow through showed that food was passing through my system very quickly, like in my small intestine. Then my colonoscopy happened, and my doctor informed me that there was indeed inflammation and thickening of my ileum and he did biopsies and they were not cancerous or anything like so. My endoscopy revealed my stomach to be completely red, but it wasn't cancerous or anything like that. So I take omeprezole for that now. He sent my blood to get tested specifically for Crohn's, and he said that the test came back negative. But he seems to think that I am in the beginning stages of Crohn's disease. He prescribed me Pentasa to take 4 times a day every 6 hours.

Alongside this, I've had lots of anxiety and depression. I'm on .5mg of Klonopin for my panic 3 times a day, and i've tried 2 long-term meds that havent worked so I'm finding another when i meet with my psychiatrist on thursday.

My GI doctor wants me to get set up with a Rheumatologist and an Opthamologist once my insurance kicks back up again on May 1st because I guess Crohn's disease effects your eyes and can cause all kinds of problems with your body outside of your digestive tract..

I'm just really scared right now at this point because I can't meet with any of the other doctors for another week or so. I feel hopeless. My head constantly feels like its going to explode, it has so much pressure in it, my abdominal area hurts a lot, I'm always sweating, and I have low grade fevers off and on every day between 99.0-100.0. I have some vertigo, and my heart is always pounding a lot.

I don't know anyone with Crohn's disease and I am not finding anybody in my family or any of my friends who know how to help me with this, and I don't know what information on Crohn's on the internet is acurate or not...Where can I find accurate info on everything Crohn's disease can do to every part of your body?

Has anybody else diagnosed with Crohn's been through any of the things I went through leading up to my diagnosis, and after? The sweating, fevers, and twitching, the heart palpitations and developed really bad anxiety and depression?

I just feel so alone and I don't know what to do anymore. I feel so sick every day that sometimes I just feel like giving up and giving in.

Hi Adamdoubleyoo, and welcome to Healingwell, although sorry for the reasons you have to be here. One good place to find accurate information on Crohns is at the Crohns and colitis foundation, you can find them at ccfa.org. Also please feel free to ask any all questions you have here. I am sure someone here will have an experience to share with you. Also do not freak out reading some of the issues folks here have, not everyone gets as sick as some on this forum. Crohns has 5 different subtypes, so many on this forum range from mild to severe with their Crohns.

I have had the disease for almost 36 yrs. My best tip to you is, when you find the right medication to treat your Crohns, stay on it at all times, even when feeling better. This is a chronic and incurable bowel disease, and if not treated properly will only come back and 9 out of 10 times it will be worse. Learned that lesson the hard way myself, and don't want you to experience any that I did.

As for diet, it is very individual for each of us. When flaring the low residue diet is good to follow to help quiet your symptoms. You can google the diet, and get some good ideas of what to eat and what to avoid. I follow a modified low residue diet all the time as it works best for "me". When I say modified its becuz I am in remission and can now add in more items. Also, some folks follow the SCD diet with some success. It must be followed to the letter to work properly, and some folks find it too restrictive, but there are a few on this forum having good luck with it.

Feel free to ask any questions you might have. Someone is sure to have an experience to share. Hugs and again welcome!!

Gail*Nanners*

Adam, welcome.

You're going to feel a lot better once the Pentasa starts working. It might be a couple of weeks. I'm surprised your Gastroenterologist did not suggest steroids to deal with the inflammation immediately, although sometimes steroids can make people anxious, so perhaps that is not a good choice for you right now. If you can work on getting calmer, I think you'll feel a lot better. Long walks are great. Yoga is awesome.

Crohn's is not likely to cause your early death; please don't panic about that. More than likely you'll have to struggle for a while to figure out what to eat and when to eat to feel at your best. You might find yourself more tired than your friends at times. You might have more bellyaches than most. The extraintestinal conditions include joint pain (about 25% of patients experience this) and eye problems (I don't know the percentage, but I think it's less than 25%). Some people have skin problems, too. When you get the right medications you'll probably do great.

There are nutritional issues that a lot of us deal with, like low vitamin D and low iron, because we're not absorbing nutrients correctly due to inflammation in the bowel. It is important to eat a balanced diet and to take vitamin supplements (if you can tolerate them). The ccfa.org website that nanners pointed to will have a lot of info about diet that you will be able to read.

I'm going through some testing right now about irregular heart beats. I'm annoyed every time my DR brings up stress, because hey, I'm 49 years old and I know what stress feels like. This ain't it. Plus my dad takes a beta blocker for an arhythmia, so I'm genetically doomed in that regard I think. I don't think it has anything to do with my Crohn's - I tend to be anemic, but I'm not right now, and my electrolytes are fine. So my suggestion to you is to stop worrying about Crohn's and your heart - not to say that your heart issues aren't a problem, just that they're probably not related to the Crohn's.

Oh, and about the blood test. I don't know of any blood test "for Crohn's." There are inflammatory markers that can be found in blood, and when I go to the DR they look for those. My personal history is that inflammatory markers are not high for me, even when I'm clearly flaring. So there you go. Your GI was right to look past the blood test and do a colonoscopy. Biopsies of the bowel are really the best way to diagnose Crohn's.

Foods seem to be very individual to each of us. Most have to avoid popcorn, corn, too much roughage. But its best you keep a food diary and keep track with what agrees with you and what doesn't. Good luck!

Adam - so sorry you've had such a tough time with your diagnosis. I was diagnosed in my 40's after passing out in my bedroom during a stomach flu -- I had an obstruction. But, once that was under control, I've had an OK time with it -- some ups and downs but mostly am able to manage. Right now, I seem to be in a bad pattern so have been working with my GI doctor -- it's important that you can't talk to your medical team and get the answers you need.

When in a mild flare, I avoid carbonated beverages (like my beloved diet coke), meat, spicy food and sugars. A more severe flare - I go low-residue and mostly liquid. But, everyone will have different things that bother them.

Remember that "everything" isn't Crohn's related. Once you get your GI tract under control, you should still try to get the right meds for anxiety, food sensitivity, headaches or other issues you might be having.

Good luck -- this is a good place to ask questions. Lots of caring people with experience here.

and also, does anyone suffer from insomnia because of Crohn's and everything it causes? I can never sleep anymore. The only way I sleep is when I've been up for so long that I just pass out. Not even my Klonopin works, even when I take it with tylenol pm.

I too was diagnosed at an early age 21.....I started having stomach pain, diarrhea, blood in the stool...I just felt awful...I went to a GI and they did a flex sid and discovered I definitely had ibd, although they couldnt differetiate between ulcerative and crohns...Then I went and got a colonoscopy and the doc said he was pretty sure its crohns. I have had 1 flare up that landed me er twice. Like you I had fevers palpitations (which are scary) sweats, and no appetite...Now I am 26 and on asacol and am happy to say I feel better than ever. Hang in there, its very scary initially not knowing whats happening...I did alot of research online to learn more to eventually find my course of therapy and hope u will too...Good luck

yeah i feel like i could be malnurished. the food i have to eat isn't very Crohn's friendly I am finding.

I started taking multivitamins yesterday to get some of nutrients and things that people say you have a harder time absorbing due to Crohn's disease

My GI doctor said that sometimes Crohn's disease can be linked to other autoimmune diseases like Lupus? I have to see a Rheumatologist for that purpose as well. Has anyone else had experience with this?