Has anyone not had abdominal pain and the usual symptoms? My diagnosis was a total shock to me, I never had the severe ab pain or noticed any of the symptoms that I read about. I had a miscarriage and during an ultra sound they noticed something strange. After a whole lot of tests and stress I was diagnosed with Crohn's. I've been on meds for 3 years now and the swelling hasn't gotten any better so now they're talking surgery. Just wondering if any one else hasn't had the usual symptoms and also for those of you who have had surgery... what was it like after.
I didn't have a lot of the normal symptoms either. Actually, what started it was I had Appendicitis 3 years ago and when they did a Cat Scan at that time they noticed I had a small mass in my small intestine (in the terminal ileum). They went ahead and took my appendix out and decided to just keep an eye on this mass since we didn't really know what it was. So I had Cat Scans periodically to check on it and it never grew that next year so we stopped checking on it.
Fast forward 2 years later, I started having stomach pains off and on. I honestly never thought about the mass because it was never a concern for me. I kept thinking it was things I was eating. For the most part, I tried to ignore the pains when they'd come. Finally one day I couldn't get out of bed. I felt so nauseous and had this pain on the same side that I had when I had appendicitis. I knew something wasn't right so I went in to the ER. After looking at a new Cat Scan, they said it looked like the mass had grown. They felt that even though it wasn't totally blocking things that I should still get it out because it was causing a partial blockage. So I had the surgery in August and after doing a biopsy on the mass, they said it was fibrous scar tissue with ulceration with a high probability of Crohns. We were all surprised to hear that. I didn't have the normal symptoms of weight loss, blood in stool, etc.
We decided I should have a colonoscopy and endoscopy done. I had that done in January and it showed I had a lot of inflamation and ulcers throughout my small intestine. However, it did not show Crohns this time! Go figure. I can't understand either. The Gastro doc said it could still be Crohns or not. Still, the treatment's the same whether I have it or not. The started me on Entocort and Nexium and I feel pretty good really since my surgery. They're still not sure if I actually have Crohns or not. I don't know why a diagnosis is so hard to find here. The ulceration and inflamation is in the terminal ileum where you usually see Crohns and my surgery said 97% probability of Crohns but now they're not sure. If I do have it I apparently have a mild case of it. Hopefully, we'll find out soon.
I hope any of this helps. Feel free to write back if you'd like to talk some more. Another good person to talk to would be Lizzie. She's pretty knowledgable about Crohns. Best wishes to you! God bless.
Thanks April for responding. It helped a lot to hear your story. I'm so frustrated by everything right now. I feel like I"m not doing my job at work, I haven't figured out how to balance my new son/home life and work and now all of this surgery talk comes up. How long did it take you to recover from the surgery? The surgeon told me 6 weeks and the part that bothers me the most (and it may seem silly) is that for 6 weeks I couldn't pick my son up.
6 weeks is about right. You really do need that time to allow your body to heal completely. I know it's hard but don't push yourself too soon or you'll end up back in the hospital. Allow others to do more around the house and help out while you're recovering. Just take it slow. I was blessed that our church had people bring over meals for the week I was in the hospital (for my husband and kids) and the week after I got home. That helped so much! I know I didn't feel much like cooking and my husband would have just fed the kids PB&J and macaroni & cheese!
I wish you the best. I hope everything works out well for you. Take care!
Hi - Crohn's can be a very difficult disease to diagnose as not all patients have the same symptoms. For instance, when I was finally dx in 1970, I only had severe weight loss and diarrhea. No pain or bleeding. It took some 8 months of tests, a couple of in-patient episodes for blood transfusions as I was anaemic, and I then developed a swollen abdomen (think it was called toxic megacolon) so they did a laparotomy surgery. There was no colonoscopy or endoscopy in those days, so the only way to find out what was wrong was to open me up - from the navel to the top of my pubic bone. They found 15 different places of inflammation - ulcers and crypt abscesses. Even before the pathology tests on the biopsied tissue was completed, my gastro and surgeon were pretty sure I had Crohn's, as the inflammation "skips" between normal lengths of intestine. Ulcerative Colitis is only found in the large colon, and affects all of the tissue.
I can only speculate (not a good thing to do!) that your swelling may be caused by a stricture in your intestines and if it is very narrow, there are no meds to sort this out, just surgery to either widen the intestine or resect the damaged portion.
When I had the laparotomy I was in hospital for a month, as I was seriously underweight at 70 lbs and very weak. They put a hoist over my bed as I could not even sit up without help. I was put on 60 mg a day of prednisone and this brought the disease under control, but steroids do not keep the disease in remission and I had many bad flares and hospitalisations for IV steroids. Some 20 yrs later I got my first rectal haemorrhage (not just blood on the toilet paper, but filled the pan - sorry to be so gross) and had 4 more, until I went on to methotrexate which is an immune suppressant, very different to steroids. I now self inject 12.5m a week and happy to say I have been in remission for 7 yrs and feeling pretty good. I guess I am one of the unlucky ones as my gastro said some Crohn's patients only get one or two flares and the disease burns itself out.
Did you have a colonoscopy and/or endoscopy with biopsies to categorically diagnose Crohn's? As far as I know, this is the only procedure to properly dx Crohn's, or indeed, Ulcerative Colitis.
I would need a lot more answers if I were you, before agreeing to surgery. Can you get a second opinion with a gastro who has a lot of experience with Inflammatory Bowel Diseases? Once they remove part of the intestines, this usually leads to worse diarrhea and does not solve the underlying problem of an auto-immune disease. There are lots of new meds out there now and you should be able to find one that suits you, with little side effects, if indeed you have IBD.
Good luck.....be proactive and ask questions!
Hi Liz - Thanks for your feedback. I've had a few colonoscopys done, biopsy has confirmed it's Crohn's. The stricture/swelling hasn't changed in 3 years, I guess it's good that it hasn't gotten worse. In the last couple weeks I've had a bunch of different tests done but ultimately my gastro recommends the surgery at this point. I saw a surgeon last week who was surprised that I could even get anything through because it's really swollen. Anyway, had a CT scan done today and am going to have a follow up with the surgeon next week or so. Planning on meeting with my gastro again to ask a ton more questions. And then I am planning on getting a second opinion. A friend of my mother in law knows a doctor who specializes in Crohns so I'm going to see if I can get an appointment with her. My gastro wants me to have the surgery within 6 months and she and the surgeon filled me in on the after effects...
I'm just so frustrated. I'm a sleep deprived, emotional walking mess and it annoys and frustrates me. I'm still trying to figure out how to balance a new baby and work... adding all of this in to the mix is starting to push me over the edge.
I'm so glad I found this site and you guys. My hubby means well but I don't always feel he understands my frustration and my fears. Having people who know how I'm feeling is really wonderful.
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