Recently Diagnosed with Ulcerative Colitis, Not Sure What to Think

Diagnosed with Ulcerative Colitis May 2017. I went for years with mucus and slight bleeding on bad constipation days until I got really bad bleeding in about April of 2017. Finally saw GI and after biopsy performed to rule out any infection was diagnosed.

Controlled with Canasa Supps and high fiber diet. Unlike most folks I suffer from constipation and not diarrhea. Also experience muscle/ tendon pains and random hives.

Some background on me:

45 year old Male. Pflugerville,Texas. Father of one, Married and have successful long term career. Mostly worried about long term implications of this. This being all new to us and having to find ways to manage it.

Some more on me and what I like to do:

Electronics Engineering technician by day and hobbyist mechanic on my off time / weekends. Enjoy cars, motorcycles, and tech gadgets.

My Questions for the UC’ers Out There:

I would like to know from other users if they have also experienced any type of random muscle / joint pain and any skin conditions such as hives or psoriasis. My primary doctor ran a full metabolic panel which showed I test positive for ANA’s ( antinuclear Antibodies ) on the low range but still positive. But my Rheumatoid factor was OK.

Reading online what that could be freaks you out because it can range anywhere from it being just the side effects of the meds, your UC itself causing it since it is an autoimmune disorder or worse being Hepatitis or some other type of viral infection.

My hives condition is more like Urticaria as I will get a hive randomly on my body and it will go away within an hour or two. Found out I am sensitive to cold as I swelled up when working outside one day. Hot shower and 30 mins later I was fine.

So far GI visits seem to be more of them just checking to see if it’s controlled. Been on the Canasa for 6 months now. Still dread inserting them. I found its best to do in shower and just get cleaned up afterwards.

Also experienced some insomnia coupled with stress on top of this. I’ve tried melatonin and my doctor gave me some Trazodone to help me sleep. It works ok some days but I still wake up and first thing I think about is my condition and what could be wrong with me.

I get to see a Rheumatologist at the beginning of the year so hopefully can find whats causing my other symptoms. Mostly just been scared of whats going on within me that isn’t able to be diagnosed easily. Still holing on to hope. We will see.

Medications that Seems to Be Working;

Canasa suppositories, high fiber diet, lots of water. This combo seems to be working well for me. Minimal blood only during a flare up.

written by Jackson

submitted in the colitis venting area





10 Responses to Recently Diagnosed with Ulcerative Colitis, Not Sure What to Think

  1. Adam
    Adam February 4, 2018 at 1:37 pm #

    Hi Jackson,

    Thank you for sharing your story.

    You posed a really good question with regards to the joint pain/sensations and skin issues such as psoriasis.

    Quite coincidentally, just a few weeks ago(the the previous blog posting on this site) was actually the results of the skin survey that over 500 site users participated in. And, as you may have guessed(or wondered about)…psoriasis was in-fact one of the most talked about skin conditions that many people with UC also deal with. It is unfortunate that there is more to UC for many people than the “typical” UC symptoms, but it appears to be the reality for so many.

    Here is the link to the skin survey in-case you haven’t checked it out yet:

    https://www.ihaveuc.com/survey-skin-problems-related-to-ulcerative-colitis/

    Also, there is another survey which was done some time ago on the site all about joint pains, here’s that link too:

    https://www.ihaveuc.com/99-person-colitis-joint-pains-survey/

    As for me, I’ve dealt with both psoriasis and joint pains. The joint pains have largely gone away over the years, I think this may have to do with a combination of being off medications that may have adversely effected me, and having my UC pretty much under control, especially compared to the days when I was was living with severe UC and out of control joint pains at the same time..

    Either way, there are some really good ideas for the skin conditions and how to deal with them within the survey link above, and I hope you get some ideas that can help you out on this journey.
    Thank you so much for sharing, and please keep us posted on your progress!

    -Adam

  2. Andy February 4, 2018 at 5:45 pm #

    Yup had psoriasis and hives, never get the joint pain though.

    Try FMT.

  3. Maddy February 4, 2018 at 6:01 pm #

    Look up the Autoimmune Protocol Diet. Turns out that there are over 100 autoimmune diseases (including thyroid, psoriasis, RA, etc. and there is a diet that works to help manage them. Although I had done some elimination of foods, I hadn’t done it in a disciplined manner. It’s all on the web. However, I signed up for the 6 week class (SAD to AIP in 6). Since I’m on the better side of a 3 month rough time with the UC, of course, anyone with a bad gut cannot eat all of the food (I use a blender for some of it to “pre-digest.”) I am already feeling a lot better. Scripps Health conducted successful studies including several people with UC and several with Crohn’s. “Autoimmune Wellness Handbook” is a very helpful book. There is a ton of stuff out there. Since you have multiple side effects, it sounds like you might want to seriously consider seeing what a change of diet might do. it’s not as hard as I expected – but more cooking that I’ would have liked.

  4. Michael February 4, 2018 at 9:38 pm #

    Jackson

    My name is michael

    I’m a 38 year old male , father of 1.

    I was diagnosed with ulcerative pancolitia March 2015.
    Bed ridden for 37 days, lost 60 pounds (was at 245) and I thought I was dying.

    I’ve been on an oral pill called Mezavant since my diagnosis.

    As of April 2017 I began to break out in hives around my midriff and armpit.

    Im self diagnosing with Leukocytoclastic vasculitis but will get confirmation soon.

    Swelling in my eyes that make me feel like they are going to explode.

    I understand where you are, and how you feel.

    Please try to look at life in this matter, if you were capable of functioning every day life without authority, fever, or blood in your stool and everything else isn’t that big of a deal.

    Stay focussed on what is important in life and try to look past the imperfections that you are suffering from.

    You’re alive, and this is just another chapter in life.

  5. LiLiA
    LiLiA February 5, 2018 at 3:09 pm #

    Hi Jackson. Thanks for sharing your story. It’s very scary when you first get diagnosed, and having all the other symptoms you’re experiencing certainly doesn’t help with being anxious about it all.

    After my 1st big flare and a big prolonged dose of steroids, I suffered with muscle and joint pain BIG time! Took a few months after coming off the drugs to settle, but it did get better eventually (and gentle exercise really helped).

    Secondly, during the same flare, I had both diarrhea and constipation at the same time. The left side of my colon was inflamed (hence the diarrhea) and I had constipation on the right side. Just one of the many joys of this disease!

    Finally, in my experience, Insomnia and stress go hand in hand with UC. I hardly slept when 1st diagnosed due to the constant worry. Plus, i’ve learnt that my UC is always worse when i’m stressed. My mum was diagnosed with cancer just before my 1st flare, i was having both relationship and work problems just before my second. I’ve since taken on a much less stressful job, I do pilates and yoga regularly, plus I find that acupuncture and reflexology helps to chill me out.

    It’s so hard to remove stress from your life but it will probably help you sleep too. During my flares I have suffered with chronic fatigue and could sleep for more than 12 hours a night and even nap during the day…. Oh the irony!

    My advice to you is, try not to worry and remember this illness doesn’t have to rule your life. It can be cruel, unpredictable and frustrating at times, but it can be managed.

    I wish you all the best and hope you get the answers that you need. Will look forward to seeing your next update.
    Li Li

  6. Angela February 5, 2018 at 6:11 pm #

    Hi, My daughter was dx’d w UC in summer 2014. She had bouts with hives which were deemed “chronic remitting urticaria” for years prior to developing UC symptoms.

    She also occasionally experiences cold hands w/ Raynaud’s-like symptoms.

    Lialda and Canasa have been working for her. She’s currently just on Lialda. When she used Canasa, she did so at bedtime. I can’t imagine it’s enjoyable for a 18-twenty-something year old person– or anyone of any age dealing with a rectal medication, however she’s always been matter-of-fact about it.

    Wishing you all the best.

  7. Jackson Cruz February 6, 2018 at 5:14 am #

    Thank you everyone for your replies. They do bring some insight as to how everyone suffers differently with UC.

    Since my initial post I got to go see a Rhuematologist. First visit I explained the muscle and joint pain without inflamation and the slightly elevated tier of 1:80. He went on to explain how some folks have slightly elevated titers and no autoimmune disorders such as Lupus or RA. But, being how UC isin fact a autoimmune disorder it may be all stemming from that. Labs ordered and all came back normal except for a slightly elevated calcium. Not exactly sure what that means but have another appointment in a few weeks to go over the results and move forward from there. he will be working in conjunction with my GI to find the right meds combo.

    In the meantime I do find myself having to take Tylenol for the pain at times when I want to work on cars. I also now take a Zyrtec every day to avoid hives and itchiness. The worry is there but since my blood work is normal. So I find myself in limbo as Im ok but not ok. We shall see.

    Thank you everyone…………………Jackson

  8. Jeff February 14, 2018 at 1:09 pm #

    I have both UC which I got first in 2014, and RA which followed in 2017. The only positive is my UC symptoms basically stopped as my body is busy attacking my joints. I will trade the bleeding and cramping for a little joint pain. you know mix things up a bit. If it I can’t make light at what hasn’t killed me so far then I am not dong a good job living!

  9. Gina February 28, 2018 at 1:55 pm #

    Years before I was diagnosed I would break out in hives on my arms, legs, neck and even mouth! No doctor could ever find the real issue but I was finally diagnosed with heat induced urticaria. Another issue I had was my fingers would turn white and blue in cold weather. My doc thought I may have had Lupus since I had some markers, but that was later dismissed. Fast-forward about 15 years and I had my first flare. I don’t know if they are related but I always wondered. After my first colonscopy during my flar I could have sworn the nurse told me I had something that sounded like microscopic Colitis. I wish I could think of the word because after doing research on it, it sounded like what I had since I had the hives too. ( it wasn’t microscoptic but sounded close to it). Anyway…. I was given steroids (3 months) and Lialda and for the most part I’ve been good for 3-1/2 years. I still have days when everything is not quite right and my stools never returned to normal but for the most part I’ve done well on the Lialda (2/day).

  10. Gina February 28, 2018 at 2:01 pm #

    Just thought of the tern (see my previous post). It was mastocytic colitis. When I mentioned it to my present gasto guy, he acted as if he had never heard of it and said they must have meant micrscoptic colits.

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