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New possible diagnosis, but unsure ?

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Ulcerative Colitis
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Posted 4/9/2013 8:08 PM (GMT 0)
Hello all,

For a long time I had had occasional bleeding and rectal pain up around my tailbone. I always used to need to strain to have a movement and hard stools that hurt, never diarrhea. I self diagnosed myself with an anal fissure but while I managed to stop the bleeding with stool softeners, but pain eventually increased and I lost a ton of weight. So I went to a GI.

While at first he agreed with me that it sounded like a fissure, I recently had a colonoscopy and instead they only found inflammation in the rectum and cecum, no fissure. So i've been told that the biopsy's are consistent with a mild colitis and have been prescribed canasa.

But I'm still not convinced. UC runs in my family and I worry that my Dr was just looking for that and not doing other tests to rule other things out. I still have varying degree's of pain and irritation with movements without blood and I still haven't stopped taking stool softeners. I'll only go once a day. Does this sounds like UC to anyone ? I'm looking for a little perspective.
Posted 4/9/2013 8:14 PM (GMT 0)
You had a scope where they found inflammation. You have a family history of UC. What other explanation do you think there is for your current situation?

The canasa is going to treat the rectum but what meds are you taking to treat the cecum?
Posted 4/9/2013 8:17 PM (GMT 0)
Biopsies are pretty much the gold standard here, if it looks like UC it probably is. You can also ask for a fecal calprotectin test which is very reliable in differentiating IBD from other kinds of colitis.

I am kind of confused about your pattern of inflammation though -- the cecum is a few FEET away from your rectum, and inflammation from UC is almost always continuous. Did your doctor say anything about that?
Posted 4/9/2013 8:28 PM (GMT 0)
My inflammation pattern was the same at first. My GIs have been unwilling to commit to a UC vs. Crohn's diagnosis because of that. I think it was Quincy who pointed out to me a while back that some unusual presentations of UC are just like this: rectum + cecum.

Ultimately it doesn't matter. You treat the same way. Rectal meds for the rectum, oral meds for the cecum.
Posted 4/9/2013 8:32 PM (GMT 0)
Interesting, didn't know that! I withdraw my comment :-)
Posted 4/9/2013 8:49 PM (GMT 0)
The canasa is all that I'm on. My follow up appointment isn't until May. My Dr only called me to say that the biopsy was consistent and asked how I was. I think the inflammation was so mild he's not giving me anything else but wasn't to clear. That was last week. I was feeling better but then I had a grating bowel movement and feeling more irritation. Its like a piercing itch between my buttcheecks.
Posted 4/9/2013 9:01 PM (GMT 0)
Have you had blood tests to check for anemia, inflammatory markers, vitamin D levels? Any problems with indigestion, gas, appetite? Any weight loss?

These are the issues your GI should be discussing with you. I don't like it that you had inflammation found at the cecum and it was left untreated. That doesn't bode well for this GI.
Posted 4/9/2013 9:24 PM (GMT 0)
i was always more on the constipated side my whole life. My first sign of UC was just bleeding a bit (wiping) so it took a year of trying to treat other issues before getting scoped and diagnosed.

My 1st scope also had "patchyness" not common to UC but still given that diagnosis. 7 years later they are now going to look at maybe Chron's but we'll see what happens. It is not common but it can happen.

All this to say that yes, if only symptom seems to be a bit of blood, that can still indicate IBD. Especially if your scope and biopsies indicated such.

It is also very normal to be in denial about diagnosis for a while. It was only at 4yrs in with a first more typical flare that I accepted my diagnosis.

HOpe you figure things out soon and get into a very long remission.
Posted 4/9/2013 10:02 PM (GMT 0)
I did lose weight, but no other discomfort other than the rectal issues. But that was also around the same time that I started taking Miralax regularly and eating a lot of fruit, so I'm sure that combination is somewhat to blame. When I was actually bleeding I had actually gained some weight.

No bloodwork yet, but I think that is partly my bad. I forgot to ask about further testing when he called, and I think he wanted to see how I do on the Canasa before doing more. He had mentioned doing genetic testing and small bowel testing when I was still out of it after my scope, so I'm sure that'll be something I'll bring up when I have my follow up. I'll probably see my GP before then, so maybe I can get her to get the ball rolling on the bloodwork. My twin sister is one of my family members with UC, so I think I have always felt that I was destined to have problems eventually :/ Her symptoms are the usual variety though
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