A New Diagnosis

Just going to get to the point: I saw the IBD Specialist on Monday and she said that I have *Crohn’s Disease* not *Ulcerative Colitis* due to my fistula. That was not what I wanted to hear. Crohn’s is worse than UC. Crohn’s cannot be eradicated by surgery. Crohn’s is *forever*.

Luckily IBD Specialist had an opening for a colonoscopy at 11am the next day so I took it. I had to do a bowel prep and they gave me Golytely. It was THE worst bowel prep ever–an entire f*ing gallon of foul tasting liquid. Even mixing it with apple juice couldn’t make it civilized. I had stomach cramps, bloating, and severe dehydration. So for future reference–do NOT take Golytely–insist on something (anything) else.

I felt so bad (weak, muscle cramps, sore hemorrhoids and rectum, no sleep) by the time I was done with the prep that I had Mr. MLACS grab me a wheelchair to get from the parking garage to the office. Of course BG was with us too, and Mr. MLACS had planned to take her to the childrens museum while I had my procedure. Unfortunately, it was required that Mr. MLACS remain in the facility during the procedure so he and BG just ran the halls. God bless Mr. MLACS–he has had a tough couple of days worrying about me and keeping up with BG.

What the colonoscopy revealed:

  1. I have severe left-sided colitis. The photos look like chopped liver.
  2. The rest of my GI tract is pristine
  3. Official diagnosis: Crohn’s Colitis *or* Crohn’s Granulomatous Colitis

So IBD Specialist wants me to restart my Rowasa (mesalamine) enemas, and if I find I cannot retain them then she will switch me to cortifoam.

IBD Specialist is confident that she can get me into remission with drug therapy and did not even hint at surgery, so there was no discussion of surgery and no meeting with a colorectal surgeon.

I liked the IBD Specialist and her team, and I am relieved to finally be able to relax because I have a highly motivated and highly competent medical team. I only wish that I could keep them, but unfortunately they are the “House” (if you are familiar with that tv show) of IBD and they only take on problem cases and then once they fix you they send you back to your regular GI.

XOXO,

MLACS

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22 thoughts on “A New Diagnosis

  1. Well it’s good to have the right diagnose finally (hopefully!). Let’s hope that the new drug therapy will get you into remission. I know a few people with Crohns actually. One of them goes to the hospital every six weeks for a drug infusion to reduce inflammation. He lives a normal life, just gets bad flare ups now and then. A friend at work has it too and she seems to have worked out with a food diary what her triggers are. Of course I realise that some Crohns are worse than others but I hope you’ll also be able to manage it and get a better quality of life back! Hugs x

    • Thank you! Yes my life was not ruled by disease until these past few years–I had many years of remission where I just took my pills and avoided certain foods and I was “normal”. It is possible to live an uncomplicated life with Crohn’s and UC. Maybe I will have more years of remission too. XO

    • No, the only chemo drug used for IBD (that I’m aware of) is Methotrexate–I won’t mess with that stuff because I want to have another baby and also I would rather have my colon out than use that stuff. My drug options are: 6MP, Imuran, Cyclosporine, Cimzia, Stelara, and Entyvio. Waiting for results to see if she’ll let me add 6MP to my current drugs (Humira + Prednisone). XOXO

      • That makes sense. A friend of mine is doing Remicade as well (reclassified as a chemo drug because of the safety requirements for administering it and how it metabolizes). Im glad you’re not doing those. Not that Immunosuppressants are a treat. Boo!

      • Ewwww, I used Remicade back in 2013. I don’t like that it’s considered a “cancer drug” now. GI doctors call this class of drugs “biologics” (Remicade, Humira, Stelara, Cimzia, Entyvio…I think that’s all) and interestingly they actually put you at risk to develop various kinds of rare lymphomas. So I wouldn’t have thought of them as chemo-type drugs given that they can cause cancer. They all suck. XOXO

  2. I’m happy to hear you finally have better answers, even if it’s not what you wanted to hear. Hopefully this means you’ll be on a better road to remission. But having a good team and support system always makes it easier and it sounds like you have that! Best of luck!

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