Join the iHaveUC.com FREE email list, and join over 15,000 other subscribers managing their lives with ulcerative colitis

UC Flare: Confusing Symptoms

Intro:

Originally diagnosed in early 1990s with severe proctitis, with one minor flare (lasting two weeks) two years ago I’ve been pretty much symptom free for more than 15 years. Had plenty of rigid sigi’s in the 1990’s and a full colonoscopy about 2000, the only recent investigation has been a flexi which showed full-on colitis as far as could be reached during the acute stage.

Some more about Derek:

I’m a 53 year-old father of three, married to Ann for 29 years. I work designing silicon chips and enjoy music and stargazing. Recently I’ve been rebuilding my 12″ newtonian telescope.

Symptoms:

Actual symptoms few and far between; BM’s typically twice a day, no blood, well formed, occasionally with a little mucus in the mornings. However blood work is a different story with ESR > 40 for the last month and resting heart rate 88-90 indicating pretty severe illness. Hb is 122 indicating mild anemia

Ulcerative Colitis Flare: Confusing Symptoms

This latest flare has been a long story but started in late August with severe stress while on holiday. I couldn’t get access to a GP or meds for a week and so by the time I did things were well under way. I only managed to see a locum, so had to suggest my own treatment, 2x800mg Asacol + Colifoam, which has worked well for me in the past. Things nearly got under control (no diarrhea) but I started a raging sinus infection, lots of mouth ulcers and a painful tongue. Again unable to see my GP I eventually saw another GP who took a blood sample, the results of which no-one looked at.

By this time I was deteriorating fast with temperature, high pulse, diarrhea (5-6x) and ended up being admitted to hospital. Over the following 2-3 days the consultant team struggled to figure out symptoms but after a flexi sigi and abdo radio x-ray decided that the bulk of what was going on was acute colitis and so started on 40mg IV prednisolone + 2.4g (2 doses daily) Asacol + IV antibiotics. After a couple of days I was responding well and transferred onto oral pred, and after 1 week was discharged from hospital. At peak, my ESR was 322. During my week in hospital I lost 14lbs, and since August nearly 30lbs weight.

Since then I’ve been on a standard prednisolone taper of 5mg a week from 40mg. Since 25mg it’s been getting harder and harder to cope; I’m now on 15mg and my resting pulse has gone up from 82 to 88.

My GP is monitoring fortnightly with blood test and was sympathetic this week to my request to slow the taper down. I should go 15mg to 10mg tomorrow but feel I’m probably going to try another week at 15mg as this last week has been difficult with shakes and the rising heart rate.

My real concern is that the ESR has been slowly rising as I try to reduce the prednisolone and my pulse is constantly telling me that I’m not well.

Can anyone relate to having near-normal BM’s, very limited abdominal discomfort, but blood work shouting majorly ill ?

The only other weird symptom I have is foot drop, which started while in hospital. This has been diagnosed as peroneal nerve damage and I “just need to exercise”. However exercise hasn’t done much in 6 weeks.

Medications / Supplements / Dieting:

I’ve been on a pretty limited diet; mostly plain white rice with chicken/turkey/pork and carrots. I tried VSL-3 and found this really dealt with the foul smelling gas, so have been taking 3x daily. I’ve been supplementing snacks with rice cakes + hard cheese, and controlling fiber using one tsp pysilium husk twice a day. On this diet I’ve managed to put on 3lbs in the last month.

written by Derek R

submitted in the colitis venting area




blood tests

3 Responses to UC Flare: Confusing Symptoms

  1. Adam
    Adam November 17, 2014 at 10:34 am #

    Hi Derek,

    I wonder if the blood work results are mostly due to the prednisone you are on/have been on recently? Have your doctors made any mention about that?

  2. Derek R
    Derek November 17, 2014 at 2:21 pm #

    Apparently the prednisolone should be keeping the inflammation markers low (er than they currently are – my GP is expecting something in the low 20’s). This tallies with the ESR increasing as I try to taper the pred, i.e. something is continuing to drive inflammation in me.

    Since posting the original message I think I may have discovered that I have CD as well as Colitis (or some kind of Colitis/CD hybrid) since over the last three days I’ve eliminated dairy from my diet; my HR has dropped back to 80 and I’m feeling quite a bit improved. I guess I’ll find out with the next blood test result on the 25th!

  3. Joyce C
    Joyce November 17, 2014 at 2:50 pm #

    Hello Derek. Sorry to hear you are having troubles that seem beyond your colitis. I too have been diagnosed with severe pan colitis and severe progtosigmoiditis. I have been flare free for the better part of a year now with diet (went gluten free) and various natural products that I found recommended on this site, no meds.
    When you mentioned in your post that you are concerned about mouth sores and sore tongue it resonated with me. I too suffer from recurring sore tongue and mouth sores and it is a very weird feeling. I now use OTC preparations which have helped shorten the length of these “flares”…great more “flares” :-) !!!
    Many sufferers of Colitis (IBD) also suffer from other auto immune diseases. This is referred to as connective tissue disease.
    After being diagnosed with colitis I found I started having problems with dry eyes, mouth, nose, mouth sores and sore tongue. Very sore muscles and worse joint pain. After seeing a Rhematologist I was diagnosed with Sjogren’s. Here is some info on it and you may want to look into it. I am treating my symptoms and at least now know that this is separate from
    the colitis.
    Sjögren’s (pronounced “show grins”) syndrome is a chronic (or lifelong) condition that causes dry mouth and dry eyes. The syndrome also can affect any of the body’s glands, including those that secrete sweat, saliva and oil.
    Sjögren’s syndrome is an autoimmune disorder, meaning the body’s immune system mistakenly attacks the body’s own cells and organs. In this case, the immune system attacks the organs that normally produce lubricating fluid, including the salivary glands in the mouth and the lacrimal glands in the eye.
    Symptoms include eye pain, irritation, or redness, and dry mouth. The eyes can feel dry and sandy. Many people with this condition also have vaginal dryness, joint pain and stiffness, muscle aches, dry, cracked tongue and enlarged lymph glands. Other symptoms depend on what other parts of the body are affected. For example, shortness of breath may develop because of lung inflammation and scarring.
    Sjögren’s syndrome cannot be cured, but proper treatment can help to relieve symptoms and allow you to live more comfortably.

Leave a Reply