Crohn's Disease Forum » Your Story » Aphthous ulcer on the ileocecal valve


03-08-2018, 03:31 PM   #1
Kimbo2612
 
Join Date: Mar 2018
Location: Los Angeles, California
Aphthous ulcer on the ileocecal valve

Hi all,

Just joined, been lurking for awhile. I need some help. Three years ago, I was diagnosed with a small aphthous ulcer on my ileocecal valve. This was discovered during a colonoscopy I had because of a mild burning pain. It didnít really bother me much for two and half years and then all of the sudden, it hurts like crazy most of the time and the whole right side of my abdomen has a pulling sensation. I have another colonoscopy scheduled for next week but was just wondering if anyone else had/has this experience. Thank you.
03-08-2018, 04:43 PM   #2
Scipio
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I had aphthous ulcers in the ileal region. That along with a case of severe anemia was enough for my GI to diagnose Crohn's, albeit a mild case at first. My only symptom all this time was mild right side pain.

About 5 years later the pain started to get worse and I developed a moderate stricture of the ileum and extra-intestinal manifestations and thus had to go on stronger medicine, namely Stelara.

So my case is somewhat similar to yours. I think your upcoming colonoscopy will be very telling as to how things are going.
03-08-2018, 05:02 PM   #3
Kimbo2612
 
Join Date: Mar 2018
Location: Los Angeles, California
Thanks so much for responding. Iím a super anxious patient and have convinced myself something is seriously wrong. Were you on mediciation when you were first diagnosed? The GI doctor said I only needed medication if it really bothered me, but now Iím wondering if I should have been on it all this time since itís now much worse.

Could a stricture cause an abdominal pulling sensation? How long are you on the medication?

Thanks again. I know Iíll find out more next week but it feels good to talk with someone who knows how I feel. My husband thinks Iím overreacting.
03-08-2018, 09:35 PM   #4
cmack
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Welcome Kimbo2612,

I hope things go well next week. Try not to worry, stress is hard on you. I'm not sure of the answers to your questions, but you have found a good place for support.


Regards,

cmack
03-09-2018, 11:13 AM   #5
Scipio
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Thanks so much for responding. Iím a super anxious patient and have convinced myself something is seriously wrong. Were you on mediciation when you were first diagnosed? The GI doctor said I only needed medication if it really bothered me, but now Iím wondering if I should have been on it all this time since itís now much worse.

Could a stricture cause an abdominal pulling sensation? How long are you on the medication?
I was not on medication when I was diagnosed. Prior to diagnosis the doctor didn't know which medication if any to give. After diagnosis I was put on occasional short courses of budesonide, and that worked well for about 5 years. Now with the Stelara, I'm probably on it or something like it for the rest of my life - or until they come up with a permanent cure for Crohn's. But that's not likely in the offing any time soon.

As for the pulling sensation, that sounds more like post-surgical adhesions rather than a Crohn's stricture. Have you had any abdominal surgery in the past?
03-09-2018, 11:49 AM   #6
Kimbo2612
 
Join Date: Mar 2018
Location: Los Angeles, California
Thanks, cmak. Iím glad I finally joined.

Scipio, I had a c-section 12 years ago, but thatís it as far as surgeries go. I also had internal hemorrhoid banding last year. Ouch.

My GI, who did the colonoscopy three years ago, said I didnít have Crohn's. But at that time, the mild occasional burning on the valve was my only symptom, no inflammation. Now I have abdominal period-type cramps (had tons of female tests and nothing major going on there), the burning on the valve is much more frequent and severe, that weird right side pulling sensation, and I feel like I have to pee constantly (no UTI). I also now have super soft stools that either disintegrate in the water or come out like cow pattyís. Iím a vegetarian and only eat fiber, which I increased after the banding, so I thought that was the reason for the stool change. I donít have diarrhea, or bleeding since the banding, but I can feel the food going through, if that makes sense. My colon grumbles a lot. I also have wet gas most mornings. (Sorry, if thatís TMI.)

Iím super hungry, but donít know what to eat, as the food I typically eat seems to irritate everything. Iíd prefer the loose stools over constipation, but everything Iíve read says not to eat much fiber. Ugh.

Whatís your diet like?
03-09-2018, 01:36 PM   #7
Scipio
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My diet is not very restrictive. I don't have any "trigger foods" that I've been able to identify. So other than trying harder to eat a generally healthier diet (more fruits and vegetables and less junk), my diet is much the same as before I was diagnosed.

Also, the stuff you read about Crohn's patients should limit or avoid fiber normally applies only to those with moderate to severe strictures who are at risk of a bowel blockage. Dietary fiber can increase the risk of a blockage. But if you have no or only mild narrowing of the bowel then it's usually okay to each normal amounts of fiber. But as in all things Crohn's, your mileage may vary.
03-09-2018, 08:52 PM   #8
Kimbo2612
 
Join Date: Mar 2018
Location: Los Angeles, California
Thanks. I guess Iíll find out more on Wednesday. Iím super nervous to get my results, but also looking forward to knowing what the next steps are. And Iím hoping the area thatís really sore doesnít hurt more from the prep.
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