My 21 yr old son, was just diagnosed with Chron's after being hospitilized for 3 weeks and 1/3 of his stomach and uppper portion of his small intestines were removed. It all started the end of August where he started having "stomach aches" the the end of Sept. started not being able to keep a lot of food/drinks down. Finally went to the ER after a week in a row couldn't keep anything down and lost 40 lbs. since Aug. They hydrated him and took bloodwork and sent him on his way (no insurance). Followed up at a clinic (said was stress) and sent us to a GI doctor. Went there and he scheduled an upper gi and lower bowel series. Well 3 days later, before appt, he started throwing up blood. Went back to ER and they finally did a cat scan which showed he had a perforated ulcer and blockage where the stomach and small intestines meet. After the surgery he did have elevated heartrate and was kept in ICU for a while until it went back to normal. After biopsy and bloodwork (and fact that his biological father has chron's disease) the said he has chron's. Now on Pantesa and doing better. Having a hard time gaining weight but eating better now. Please pursue your tests and find out what is wrong so you can get treated. My son never had any symptoms prior to August to suggest anything like this would happen. Dr's say it is very rare to have the chron's affect the stomach like this.
Hi - glad to be able to help. If the colonoscopy is clear, I would respectfully suggest you get an endoscopy of the small intestine or an upper GI series barium x-ray. My Crohn;s started in the small intestine, but I had no pain at all for the 9 months I was being tested - I just had diarrhea and severe weight loss. It was only when I was an in-patient for further testing, that I had pain - like a "stitch" in my right side abdomen and this alerted my physician to that fact I may have Crohn's. The pain got worse, my abdomen was grossly swollen and hard - they called it toxic megacolon. I had a laparotomy as they were not sure if it was an inflamed appendix (terminal ileum is right next to the appendix) or inflammatory bowel disease. There were no colonoscopy or endoscopy tests in those days. The surgeon found 15 places of inflammation in my small intestine (Crohn's "skips", whereas ulcerative colitits, which is only found in the large intestine is prevalent throughout the large colon) and decided there were too many areas to resect so they closed me up and put me on 60 mg of prednisone a day.
I had many flares over the years, sometimes hospitalisation for severe rectal haemorrhaging, which were solved with IV steroids. Since I have been on methotrexate (a chemo drug) for the last 6-7 years, I have only had one flare, and that was when I had to stop the mtx to have FEC chemo for breast cancer. I am currently doing okay, but my gastro found a stricture in my small intestine recently through endoscopy and I had an MRI of the pelvis a week ago to determine its' length and how narrow it is as surgery is the only option.
Crohn's can be kept in remission with an immuno-suppressant, methotrexate is only one of this class of drugs. I hope you get a proper diagnosis soon.
Liz.
Thanks for the reply! It helps to know there is someone out there listening. I think I am almost more worried that I don't have crohn's because that would mean I'm back at square one. I keep thinking I'm going to get the colonoscopy and they tell me they can't find anything wrong. If that's the case then I still have unexplainable symptoms and have spent all my money for nothing. Crohn's I can deal with, not knowing is the killer.
Right now I'm taking Pentasa, Levoquin, and finishing up a Methylprenisolone pack and due to go back to work tommorow (which I'm not looking forward to).
If it wasn't for the cramping and constant fatigue I'd be ok now. Oh and I've been on a soft diet for the past week but I did have some chicken strips last night. You never know what foods you'll miss until you can't eat it lol.
Hi - to answer your questions:
Yes, your current history does sound familiar - except for not having diarrhea and severe weight loss, but Crohn's can atypically present with no diarrhea.
Yes, you probably have Crohn's, especially if your gastro is 95-98% sure. He probably has a number of Crohn's patients and is the best person to know what is going on.
What you do now is have a colonoscopy where the gastro will take biopsies of the tissue in your intestine - this is the only conclusive way to get a proper diagnosis. If it is Crohn's your gastro will prescribe appropriate medication - which you must take to get into remission, and even then, still take them!
I was dx with Crohn's at age 24 in 1970, but still here 37 yrs later, so it is not a death sentence.
If you don't take the prescribed medication the inflammation in your colon could get very much worse and lead to surgical resection of those parts that have ulcers and crypt abscesses. Surgery is to be avoided at all costs as the shorter the intestine, the worse diarrhea can become, with malabsorption.
I have never heard of irregular heartbeats being connected to Crohn's, it may be a coincidence, or due to anxiety. The flu like symptoms are also indicative of a Crohn's "flare" where your white cells have increased dramatically and signify inflammation in your colon. Meds can bring the level of white cells down to a normal level.
Go for the colonoscopy, wait for the biopsy results and then come back to see if we can help you further. There are a lot of new medications now to keep Crohn's in remission, so don't despair, but you do need to get this sorted out.
Take care,
Liz.