Newly Diagnosed – Karen D’s Story

Karen isn't big into social media and internet...so she opted to include a picture she liked for her profile shot, who else likes cats out here!!??

Karen isn’t big into social media and internet…so she opted to include a picture she liked for her profile shot, who else likes cats out here!!??

Intro:

I began experiencing Ulcerative Colitis symptoms in February 2015. I was referred to a GE who saw me in April 2015, (almost a two month wait), and had a colonoscopy with a diagnosis of left-sided colitis in May 2015.

Some background about Karen:

I’m 44 yrs old, and currently live in Pennsylvania. Hobbies include anything to do with animals, volunteering or fostering, and playing board/card games with family and friends.

Symptoms:

Gas, bloating, some abdominal pain if I eat the wrong food.

Karen’s Story:

I no longer have any bleeding, or pus with my bowel movements, and I generally have a bowel movement twice a day. I still have issues with gas and bloating, but not nearly as bad as it was prior to my diagnosis and taking medication. My GE has described my scenario as a mild to moderate case that is low in my colon and rectum as of now.

I was a half-a-pack a day smoker for 20 years, and I used a high quality E-cig with e-liquid that contained 12mg of nicotine to help quit smoking. So between the time I put down the cigarette, picked up the E-cig and stopped using that, it was 2 months. Four months after that, I developed Ulcerative Colitis symptoms.

I also suffer from anxiety attacks on occasion, which I try to control with yoga and a 5-7-9 breathing technique, and do not take medication for this.

I feel confused a lot of the time, and have been scouring the internet for any information I can find regarding UC. I understand that UC is different for everyone, and that there is not a specific diet plan one can follow for this.

I’m also confused about what remission means for UC. Am I in remission because I no longer have bleeding and pus with my bowel movements? Or does experiencing gas/bloating/abdominal pain if I eat the wrong food, keep me from the status of remission? I’m guessing remission has a different meaning for everyone. My GE described remission as no bleeding/pus/inflammation.

Additionally, I was recently diagnosed with flexor tendinitis in the smaller toes of one foot, which is really odd because there was no precursor to the sudden pain I had with it. It was a matter of me sitting at my computer one moment, shifting my foot back to get up, and then instant pain in my toe. It felt like nerve pain. I checked to see if I stepped on something but there was nothing present.

The podiatrist wondered if I had something in my shoe that rubbed the area, and I never noticed, or perhaps I had a foot habit that I wasn’t aware of. I’m not a runner or jogger, and I can’t think of any activity of over-use that would have caused this. I swear it’s the Lialda, but doctors think I’m crazy. It’s been two full weeks now, and it’s slowly getting better, but I wonder if anyone else has experienced things like this?

Medications:

4.8 gm of Lialda, once in the morning; 1.0 gm Canasa suppository at night as needed; daily multi-vitamin.

I was never one to take pills for anything, because I also worry about side effects and addictions. I expressed concern to my GE, as well as my family doctor about the Lialda/Canasa dosage, and the overall effect it would have on my kidneys, and neither of them seemed concerned about it at all. I was previously taking Ibuprofen 800 mg (as needed), along with Flexeril 10 mg to treat chronic pain/muscle spasms associated with herniated/bulged discs in my spine after an auto accident 4 years ago. I haven’t taken IB since.

Currently I’m working my way through an elimination diet to determine what I can or can’t eat at this point. I’m keeping a daily food journal, and have become a I’m also going to try juicing because I find I cannot digest a lot of fibrous fruits and vegetables as well as I used to.

I’m also working on some yoga exercises to help reduce the gas and bloating I have.

written by Karen D

submitted in the colitis venting area




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2 Responses to Newly Diagnosed – Karen D’s Story

  1. Maggie July 31, 2015 at 4:53 pm #

    Hi, Karen D.

    Generally foods to avoid when you have colitis are gluten, anything caffeine, alcohol, and for some people dairy, except a good homemade yogurt, and junk foods. I make my own kefir and even though I still get colitis, my symptoms are much milder now. I also developed left-sided colitis whenever I quit smoking and I quit for good 6 years ago. For some reason, the nicotine, most likely, in cigarettes, acts like a medication to those of us who have certain bowel issues. I really started getting it in my early 50’s when I was trying harder to quit smoking. When I finally quit for good, I developed other problems and finally, thanks to the computer, traced that to gluten intolerance. That’s been a big issue for me and I’ve been eating sprouted wheat for a few years but now realize I can’t eat that either. I also use the Canasa suppositories, have been on 4 different biolologics. I had to stop one, Enbrel for arthritis because it quit working, Remicade, which worked miracles for my colitis but was just too expensive, Humira, which caused MS type symptoms, and Cimzia, which sent me to the hospital! Actually, diet does play a huge role in people with colitis. A lot of people swear by probiotics, which do play a huge role, which is why I make my own kefir, it has even more probiotics than many of the probiotics out there and is cheaper. I’m also making my own kombucha but just started that, it also has a lot of probiotics. Homemade sauerkraut is excellent, not the commercial kind in the grocery store. I take several supplements that have anti-inflammatory properties. The SCD diet is supposed to be the best but I’m not a meat eater much and it’s hard for me to give up everything I love. I had my DNA tested, I don’t have a gene for colitis but because I’ve consumed gluten forever, I believe that’s what started my colitis, plus I have other auto-immune issues. I really hope you can find what works for you. Keeping a food journal is an excellent idea! Best of luck to you!

    • Harold August 2, 2015 at 8:15 am #

      Hi Maggie,
      I also quit smoking and the belly pains I was having for like 3 yrs prior slowly worsened. I don’t want to get deep into my story In this reply,but,I am considering writing my own history. For years I have been wondering why I hurt so bad and why all of a sudden it went from a constant belly pain right below my navel to a colon attack (same as heart attack,but involved colon) which actually perforated my colon in three different places ( transverse,ascending & descending. This caused me to lose very much blood to the septic system. This hospitalized me for 12 days. The quitting smoking in your and Karens story really struck a nerve with me. I plan on speaking with my doc regarding this. I had also quit drinking prior to smoking and wonder if that was the cause of the pain before I quit smoking. Hmmm ?? Does alcohol have the same effect,acting as a deterrent,kinda like you mentioned about nicotine? Well this is getting a little long,so I will wait to see if I get a reply. I have decided to make my story public on this site,it will be a long one because I have a pretty long medical history with the main culprit being heart disease. Which could be causing my colon to not get enough oxygen rich blood ! My doc says he THINKS I also have ischemic colitis ( IC )

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