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Twin sister and mom both have Crohn's...but I can't get a real answer

Hi everyone,

I am a healthy ( or at least I thought so ) 44 year old female. I would normally work out 6-7 days a week, sometimes twice a day. I eat healthy and live a very active lifestyle. This was all up until last May 2014 when I was diagnosed with a peptic ulcer. I used to take a TON of NSAIDS (Advil) That is under control now. My current issue started in July 2014 when I took a trip to South Africa, I mention this because I attribute my hemorrhoid to the fact that we drove around in a van all day, every day for two weeks-all that sitting for someone who is not used to sitting around. Plus the fact that I became constipated. I was having blood in my stools and pain when going to the bathroom. Once I arrived home two weeks later I was treated for hemorrhoids-which led to having TWO hemorrhoidectomy surgeries in September. I won't bore you with all those fun details. This leads me to my current status. Immediately after my surgery, I started having severe pain, bloody stools, and running to the bathroom. At first my surgeon and GI dr said it was from surgery and I was still healing, the GI thought maybe I had IBS. I get that I am going to be in some pain after surgery but I am 4 months out and still have severe pain and blood and mucus in my stools. I finally ( today ) had a colonoscopy done. I needed to wait till I healed some to go thru that procedure. The results are as follows:

*Inflammation characterized by erythema, pseudo polyps and aphthous ulcerations was found as small patches surrounded by normal mucosa in the transverse colon in the cecum, ascending colon and transverse colon.The rectum, the sigmoid colon and terminal ileum were spared. Biopsies were taken with a cold forceps for histology.
I get the results back in a week. Fingers crossed!!

I should note that my twin sister and mom both have Crohn's disease. My sister had a resection done in the 1980's. Up until this point I have had ZERO symptoms and still I have no cramps or stomach aches or "flares"-which I am not sure how you would even describe a flare. I can pretty much eat anything and I never get a stomach ache. I only have this pain when I have to go and occasionally blood, but always mucus in my stool. And when I have to go, I have to go. I make sure I know where the bathrooms are at when I am out. Thankfully I do not work. If I did, this would be next to impossible to deal with. I know others have it a lot worse, but when you go from being so active to not wanting to get off the couch, its not good.

Both my surgeon and GI dr believe, or want me to believe I have Crohn's disease, or Colitis. I have taken the Prometheus blood test that can test for Crohn's and it came back negative ( I know those tests aren't 100% accurate). I have had fecal calprotectin tests done-which were HIGH back in October. I have also been diagnosed with Anemia from August-December and have had a CAT scan done in December with contrast that showed ZERO inflammation. The MRI I had done in November showed Unremarkable appearance of the small bowel. No stricture, mucosal thickening or hyper enhancement. In December my white blood cell count was high, so my surgeon put me on an antibiotic. And then two nights ago, out of the blue I had 100 fever. ????

So every test I have taken has basically said I am fine, but yet why all these symptoms? Does this sound like Crohn's to anyone?
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum!

It definitely sounds like Crohn's is a very good candidate, considering the family history. All of the symptoms you've listed can be attributed to IBD. You're right - the Prometheus test isn't always accurate (and when it's wrong, it is generally a false negative).

I know others have it a lot worse, but when you go from being so active to not wanting to get off the couch, its not good.
This has had a major effect on your lifestyle and you have every right to vent about it if you'd like to. Don't feel guilty about it just because someone else has it worse! We don't play "who's sicker" here - we're all dealing with the same problem. :hug:

First off, have you healed from the hemorrhoidectomies (gee, that is quite a word!)? The incisions aren't still bleeding?

If the hemorrhoids/incisions aren't still the cause of any bleeding, you absolutely do not have IBS. Again, considering the family history, Crohn's definitely sounds like a likely culprit.

How are your mom and sister doing now? Are your symptoms similar to theirs (or do they not discuss them)?

:hug:
 

David

Co-Founder
Location
Naples, Florida
If you didn't have Crohn's in your family then I would be hopeful that the biopsies were going to come back not being Crohn's. However, with everything you described and the family members with Crohn's, like Sarah above, I think you may have Crohn's :( Let's hope that's not the case and it's something more acute though!

Either way, welcome to the community. Please keep us updated!
 
Thanks for your reply David & Sarah! Sarah, yes I have healed from my surgeries and I am pretty sure the blood ( bright red) isn't coming from anything related to that. My sister deals with it on a daily basis, we are all very close. My sister has stomach pains everyday, but is not on any meds for Crohn's--don't ask me why--it's strange she isn't on anything, but I think the side effects of the drugs are far worse for her than what she deals with daily. My mom has had a colostomy, done in the late 1970's and you'd never know it. She's amazing.

I am hoping to get some answers with these test results. I don't even know where to start with questions for my GI when I see him next week. I am feeling a little overwhelmed right now. Thank you both for your nice welcome! It's a great page and I'm happy I found it.
 
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