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My biopsy result + question about symptoms

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Ulcerative Colitis
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Posted 3/3/2018 8:09 AM (GMT 0)
I was diagnosed with UC back in September, but only recently obtained my medical records (currently in a foreign country and need to them when I move back to my home country soon) and can see the exact findings myself

Biopsy #1 - Colon, ascending: nonspecific change

Biopsy #2 - Colon, sigmoid: Nonspecific change

Biopsy #3 - Rectum: Chronic active proctitis with 1) cryptitis 2) crypt atrophy and architectural distortion, mild 3) no granuloma

Assessment: UC, proctitis, moderate

I guess this all seems pretty standard as far as a UC diagnosis is concerned. I was surprised it's moderate rather than mild, given my bowel related symptoms weren't so bad at the time (2-3 bm a day, blood was rare and not much when it happened, some urgency) - feel pretty bummed to see that

I'm not on medication now as I started having chest issues (still do) after taking asacol enemas for a few weeks. The medication probably didn't cause it given I've been off medication for months and still have chest issues.

Anyways, while my bowel seems normal lately (1-2 bm a day that look perfectly normal, no urgency/blood/mucus) I do not think I'm in remission due to several other symtoms:

  • stiff fingers, with one of my pinkies feeling numb
  • pain on top of feet while walking
  • left hip pain occasionally while walking
  • sore muscle (biceps, forearms)
  • sore are of bone on lower leg that has been as issue for months


I'm assuming all theses areas are inflammed due to active UC, does anyone experience anything similar not only with joints but with muscles as well? I would really rather have more severe bowel-related symptoms than this, I went from running thousands on km a year to feeling like a 32 year old grandfather.
Posted 3/3/2018 1:49 PM (GMT 0)
Those rectal biopsies sound like UC.

Do you have asthma at all? I do and am allergic to sulfites which is used in mesalamine enemas as a preservative. I have to get the sulfite free version or else my asthma flares up pretty badly. If you are having an asthmatic reaction, sometimes stopping the meds does not help because your airways are now inflamed and it takes treating them to stop that response.

It doesn't look like you are taking any sort of maintenance medication, which you might want to look into doing to keep the inflammation at bay. You could also try steroid enemas for a while and see if that calms things down for you. The minimal absorption of steroid might also get rid of the joint pain. I find that when I flare, I tend to have a lot of pain in my hips and tailbone.

I also suggest making a GI appointment at home before you get back there, I don't know how quickly you could get in to see someone, but often there is a wait for new appointments. I would want to know I had someone to see ASAP rather than get home to find a 3 month wait for an appointment.
Posted 3/3/2018 3:40 PM (GMT 0)
See if you can get a blood test to measure your vitamin levels, vitamins like potassium can help with muscle soreness if it is depleted in any way. I would let them know about the sore lower leg, especially if it feeels like a shin splint. It could be a dvt and people with UC are at a higher risk for those. If it’s not try taking vitamin d.
Posted 3/3/2018 5:47 PM (GMT 0)
Inflammation outside of colon can happen. You have a lot in a lot of places. Also you colon inflammation was limited to rectum and was only moderate.

I think it is a bad assumption that all the rhumatology issues are due to UP - especially since you have chest issues too.

You need to see rhumatologist, and maybe someone for chest. Opinions on the internet are going to be worthless compared to someone looking at you medical history and ruling in/out other conditions.

good luck
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