Confused – Either I’m in Denial or I Don’t Have Colitis

JanetI’m a 39 year old mother of two boys age 14 & 11 and married 17 years. I lead an active lifestyle and eat a healthy diet with a balance of my favorites, sweets.

I was diagnosed after two colonoscopies 2013 but either I’m in denial or I don’t have UC. I only experienced blood in my poop for 5 months and a feeling of not being able to empty, no other symptoms.

Some more:

My family and I live in the town my husband and I grew up in, in Ontario, Canada.
I would say I’m a quiet person who enjoys working out, looking after my family but am not very social in that it makes me a little anxious.

Symptoms:

Currently I have no symptoms.

Confused – Either I’m in Denial or I Don’t Have Colitis

Last July is started finding blood in my poop and when I wiped. I kept it quiet as I figured I must have had a tear or maybe a hemorrhoid. Then I experienced the feeling of not being able to empty my bowels along with some mucus. I would visit the toilet 6-10 times a day and not have the relief of being empty, never any diarrhea. At the end of August I saw a doctor and he issued blood work and a colonoscopy but no stool sample. In October I had a colonoscopy by a general surgeon and he put me on mesalazine 2 pills 3xdaily to clear up infection. He said I had areas of inflammation but not throughout so he thought Crohn’s or UC. This was still while I was in recovery room. After 7 weeks I saw him for results and he forwarded me to a Gastroenterologist.

By December I was in for another colonoscopy for this doctor and before I left the hospital he increased the mesalazine to 4 pills 2x daily and also Cortenema rectal daily for 21 days. He had found my rectum very inflamed and farther along inflammation that an enema couldn’t reach. After 24 hours of these meds I have not bled since and quickly returned to a normal pooping schedule.

It took four months to see this doctor again for a follow up. I had followed his prescription until it ran out early January and just saw him last week, end of April. I was chastised for ending my medications without his consent and told I would be on the mesalazine, same dosage, and coryenema rectal, 1-2x weekly for the rest of my life, come back in one year.

That was it!!! No education.

I wonder myself if I had a parasite that gave me the symptoms of blood and inflammation but never got to voice it as he moved on to the next patient. So I’m confused and not convinced I have UC. Just wondering if anyone had experienced my symptoms. Every story I’ve read and websites I’ve looked at say I should be experiencing diarrhea and abdominal pain.

Adam from iHaveUC

Yeah Janet! UC or not, super happy you’re feeling better!!

Ask Adam:

“Do I have mild UC or something else? My doctor is useless. ”

written by Janet L

Hey Janet,

First and foremost, congrats to you for getting your symptoms under control so quickly.  That is really great news, and especially cool that it sounds like you had absolutely no symptoms even after your “required” medications ran out…

I have no idea if you have UC.  I’m assuming that the doctor(s) who performed your colonoscopy and diagnosed you with UC know what they are to be looking for.  In the end, we can all “have UC” but be in remission periods for long periods of time if not indefinitely that make our body and minds think we don’t have it.  Is that denial?  I have no clue.  Celebrate your feeling good, with our without UC, that’s great news Janet!

Cheers,

-Adam




10 Responses to Confused – Either I’m in Denial or I Don’t Have Colitis

  1. Amber June 4, 2014 at 5:01 pm #

    Hi Janet,

    I agree with Adam — it’s wonderful you’re feeling so well. He’s also right that people with IBD can experience remission.

    The thing about ulcerative colitis is that it can start small. And what no one may have told you is that it can spread. It might start in the rectum, but left unchecked, it can continue up the colon. So it’s important to stop inflammation from getting out of control.

    Because the medications they gave you seemed to work, it kind of sounds like it’s a verification of the diagnosis. The mesalazine wouldn’t do anything for an infection, it is used to treat the inflammation.

    I would hope a stool sample was done at the time to check for parasites? If not, it’s worth asking why it was not done. Also, ask to see the pictures of your colon from your colonoscopy and go over them with the doc.

    If the doc won’t give you time to do these things — it’s time to think about getting another opinion. You live in IBD central, so hopefully there are some good folks around who can help you sort this out!

    All the best!
    -Amber

  2. Darlene June 5, 2014 at 9:42 am #

    Janet,

    I have mild to moderate UC of the rectum and sigmoid part of the colon. Also, I have an acquaintance who has UC and we have compared symptoms. Her PRIMARY symptom is constipation even with a high intake of fiber. I was surprised to learn this as I thought UC always involved diarrhea. She explained to me that, no, symptoms can vary widely. I have another friend who was diagnosed a month before I received mine and she had such severe UC she opted to have her colon removed. (It seems there is an outbreak of UC!)

    During my colonoscopy a biopsy of tissue was run to determine the diagnosis…and I was given a picture which had two images taken of my colon…an interior view and an exterior (I think) view. Find out if you had a biopsy. If so, that may give you more confidence in your diagnosis. I also take mesalamine and over the two years since my diagnosis I have been able to reduce the amount. Inflammation is uncomfortable and is noticeable when it worsens and causes soreness and tenderness around my rectum and anus. During worse times I’ve had to use suppositories with a bit of an antibiotic cream added to them…for a 2-3 week period. And this brings healing & relief. I’m one of the fortunate ones in this group because my UC isn’t severe yet I too will have to have treatment and medication for life (according the doctor). There are others, like Adam, that are able to control symptoms with diet (although my doctor says food and diet didn’t cause UC — it’s an autoimmune disease). I have to modify my diet during a flare. I have really bad back pain because of two bulging disks and can’t stand long in the kitchen cooking so I don’t want to prepare that much food from scratch. Yet I still try to eat healthy and nutritious food.

    I wish you the best and hope you find a resolution to your quandary. Do some more internet searches about UC symptoms. Try http://www.ncbi.nlm.nih.gov/pubmed/ for reliable information.

    Darlene

  3. Erica June 5, 2014 at 5:41 pm #

    I must be in denial as well because I was diagnoised with Uc 4 years ago and haven’t had to many issues either. It’s always in the back of my mind– omg! What if it comes back but truthfully I changed my thought pattern and pretend I’m uc free. My diet is scd/ paleo. Med free since day one. My rectum was on fire and cecum inflamed as well. Also have areas in small intestine from last pill camera two years ago which is probably going to change me to Crohns. Who know, this disease has a mind of its own. Btw:: I gave up fish oils, probiotics everything.

    Best to you — Janet

    • Danielle December 22, 2016 at 9:18 am #

      Why did you give up fish oil and probiotics?

  4. Maggie June 5, 2014 at 5:45 pm #

    If you’re going to have UC, you’re fortunate to have a mild case. Now is the time to manage it so it doesn’t get worse. Each time I get a new flare, it’s very similar but yet I seem to experience different things that I’m not liking. I just got out of a terrible flare and wish to not go through that again! It got me thinking that I might just have a colectomy even though I felt before that I’d hate to go through that but I don’t want to go through old age battling this disease, I’m 63 now and may want to do it before I get to old and won’t have to worry about it any more! I wish you the best of luck!

    • Adam
      Adam June 5, 2014 at 9:44 pm #

      Hey Maggie,
      Totally agree with you about flares being similar but different, totally agree. Congrats to you as well for getting out of a nasty one:)) Have a great weekend and cheers again, that’s for sure a great feeling to get over the hells that UC can throw at us.

    • Tom
      Tom June 9, 2014 at 12:44 am #

      Hey Maggie, I opted for a colectomy last year at the age of 24. 2 months ago i made my ileostomy permanent. If you’ve got any questions, just shout

  5. Allison June 13, 2014 at 2:25 pm #

    Hey Janet-
    I was officially diagnosed 4 years ago but had very similar, mild symptoms for the year previous. Because I didn’t make sufficient lifestyle/dietary changes- the sleeping volcano awakened and I had wicked nasty flares for nearly 2 years! I always tended toward constipation and it was crazy extreme during flares- I believe this is because the lower intestinal portion was what was mostly inflamed. ANyhow- once I committed to a strict SCD/grain free diet and eliminating unnecessary stressors in my life, significant body/mind healing began. I have been pretty darn healthy for about 18 months- but I do remain ever vigilant! And I would say reaching out to people on this site and in my life really helped me through this crisis- so maybe work on your social anxiety. You deserve heaps of loving people and I am certain you have a lot to offer others as well!
    All the best and take good care of yourself!
    Allison

  6. Carla June 27, 2014 at 7:39 am #

    Janet, I too am from ontario, and was in denial, I had diaahera with blood, no other symptoms, but the colonoscopy showed different, I am still in a flare up, on Pentasa but it seems to be getting better. I had off and on diaper for many years, but this last bought made me realize I need to accept it and learn all I can. Thank god for this website, it sure is opening my eyes. And know that I am not alone in this battle

  7. Carla June 27, 2014 at 7:48 am #

    Not diaper, diaahera lol

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