• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

I guess I belong here! :)

I'm going to tell you a bit about myself.

30 yrs old. Dx with IBS 10 yrs ago. Ignored all bowel symptoms and chalked them up to being IBS. Then December 2010 - pain (like 8 to 10), cramping, and basically filling up the toilet with soft stool and little bit blood (sorry if TMI). Got into doc at end of January 2011, got a referral to a GI and then the testing began.

- April - colonoscopy - inflammation in terminal ileum, bx showed granuloma (crohn's or acute infection)
- May 2011 - GI says "most likely" CD let's either start you on meds or try a VCE. So I take the VCE, worried that I may have CD elsewhere because of IBS dx 10 yrs ago.
- June 2011 - ER visit for 10/10 abd pain. Felt like an obstruction with crampy pain, nausea, vomitting but apparently I was constipated?? (needed morphine for pain and got muscle relaxants)
- July 2011 - VCE - unremarkable. Mild inflammation in TI.
- August 2011 - bloodwork "normal"
- Waiting for appointment....
- October 2011 - Appt with doc. Unsure what to do and thinks that maybe it's not CD because I am having lots of bloating, constipation (but with soft stool never hard just doesn't want to come out and when it decides to go - it blows out - sorry again TMI). I suggest SBFT. He thought I already had one as he was looking at my results from 2002 (IBS dx)
- November 2011 - had SBFT - hate barium!! Can still feel it in my abd. Called my doctor's office today to see if they got results and if I could go in for an appt. They have the results but he hasn't dictated on it yet (more testing vs appt). I ask the receptionist the results and she says that it is abnormal. Some areas are "too fast" and some are "too slow" then she states there is a lot of medical jargon she doesn't understand. I ask if it mentions possible CD but it is not on there. She states that doesn't mean it's not that.

So I am now waiting to either get in to see him or go for more tests. Since May I have lost 25 lbs and I also get joint pain that comes up when I am feelin the worse.

So that's my story. Have any of you had a SBFT (small bowel follow through or barium meal) that indicated you had motility issues and you were dx with CD? It's not like I want CD but I accepted it when he said it in May and then for him to change his mind is hard.

THanks!!! :rosette2:
 

Crohn's 35

Inactive Account
HI Denise, another fellow Canadian here! I have had many SBFT and mine ususally go fast, one tech said did you have any bowel removed , uh yes, 2ft... they couldnt believe how fast it was. My initial diagnosis was and Endoscopy barium follow thru, it was all loopy in my Ileum area. IBS is a syndrome, Crohns is a disease. You have many symptoms of crohns and for some it can take months and many biopsies, others, one test and boom they have their answer. You just want answers and then get relief also. It very hard on your family too. Let us know what the results are ok? :hang:
 
Thanks Pen. Yours must of gone really fast then! Yeah, when they did the 30 min xray after taking the barium for the small bowel portion it was already at my sigmoid colon.

So are you saying that IBS would come as "normal" on the SBFT?

And yes I just want answers, I want relief. I want to feel better.

Thanks again for your advice.
 

Crohn's 35

Inactive Account
Even Crohns can come up normal, it took a few sbft and ct scans, scopes, ultrasounds, blood work galore and 40 lbs loss of weight. It is hard to anticipate an outcome right away but you may be one of the ones who may take awhile.

Do you suffer more on your days? It kills me. When will you get the results? Dont know about you but waiting times in Ontario is 3-4 weeks, ugh.
 
Location
NY
Good luck! I hope you get answers.
Pen - Question for you, do Crohn's patients tend to have more loops in their illeum? Danny had one 2 years ago which was reported normal except they were not able to visuslize the illeum because of multiple overlapping loops. I was not sure how normal that was. (A colonoscopy at the same time was not able to reach the terminal illeum for biopsy.)
Thanks!
 

Crohn's 35

Inactive Account
Hi Dannysmom, not sure how common it is but it is one of the reasons they can't get past the Ileum. It is where a common area of Crohns is located, thickening, and narrowing. Since it is very close to the Appendix the adjoining start of the Ileum is there and many times my Gi's could not get past it. Scar tissue is another common thing too. So yes some people have a rare occurance to get past that part.

Sorry to hijack your thread Denise!
 
thinking back its took 10 yrs for me to be diagnosed,ive had 5 biopsies and every test possible i was told ibs,diverticulitis etc etc for yrs,i have a sister and mother with crohns and rheumatoid but no-one was interested,told me it was fybromyalgia or in my head.for 10yrs i ached all over had serious yellow diarrhea violent pains in my intestines,my gallbladder aches i blow up all over my stomach,i feel sick often.finally 10yrs down the line i get some relief,well i say that and its still a battle to get any help but im getting there,hang in there.
 
When my Prometheus blood test came back positive (along with WBC and occult blood fom stool study), the nurse called and said I have crohns and that I need to see th dr. I even stopped in to get paper signed for bloodwork which the receptionist said maybe you should hold off on this bloodwork since we have a dx. So I go for my appt and said there is a new blood test for crohns that came out since you were last here. So if this is positive then it is crohns. I spend 2 weeks researching and getting used to the idea I had it to the be told ok you have it if the next test is positive. So if that new test would not have come out he probably would have just given me meds. I want it but I too have had issue for 10-13 years and would like to know what it is. So I understand what you are saying. And my feelings on ibs is the drs way of saying I have no clue it wrong with you and really don't want to take the time to figure it out. So take more fiber! I just had 88 food allergy blood test that came back with a few non basic food allergies. I had a moderate reaction to yeast. Which I am just learning is linked to crohns. And that is one of the things the Prometheus test you for, however I was in normal range on the Prometheus for it(by 1point) but moderate on the allergy test. So maybe look into food allergy test or try avoiding yeast. Which is in more then bread. Hope you feel better.
 
Top