Monday, March 30, 2009

Crohn's Casts - Take a Listen

Well, it has been 10 days since the first Remicade treatment, everything is going great. From reading other testimonials, I was expecting to be extra fatigued and achy the few days after, but no such thing. I am still not sleeping (thank you prednisone) but my house is incredibly clean, I have documented every book I own, I am caught up on all my filing, sorted through all my quilting fabric- you know what it's like! You make up stuff to do at 3:30am! Everyone handles medicine differently...

On Wednesday into Thursday evening I did have a bit of a scare. This sounds funny to say out loud, but not so funny at the time- my skin was painful! Has anyone else had this happen to them? It hurt to touch my entire upper body. As if I had bruises all over my chest, arms, abdomen and back. It hurt to wear clothes, hurt to move. My skin was incredibly sensitive. Doctor's visit on Friday- thought I had shingles (viral infection of the nerve roots, pops up when immunity is low)! Follow up with doctor, no shingles, phew! So far we do not think this was a reaction to the drug, just more inflammation. ..

Note: It is not uncommon for individuals on Remicade to develop shingles- check out this article and supporting research.

Crohn's Casts

For those who have not found these yet, these are especially good for the newly diagnosed or friends and family who want to better understand the disease:


I found these very well done, hitting topics that are very relevant and important to consider for an individual living with Crohn's. Turn up the volume! Bottom line: Be mindful of what you put in your body...

3 comments:

  1. Hello Rosie--I stumbled across your blog and will forward it to my daughter. I think I have become a crohnsy-blog stalker since I'm trying to learn all I can about this dreadful disease, and it is comforting to read about how other's cope. I am wondering what your thought process was in starting remicade? My daughter is 26 and has had crohns for 3 uneventful years, but now is experiencing problems and considering biologics or surgery, but is trying to hold out on the remicade because she wants to start a family, as it appears you do, too. Her original plan was to have a child in her 30's, but when life throws a curve ball, she and her new husband would like a child now, if she could only get into remission. Evidently, if you start on remicade and then stop, the drug may not work as well should you need it again. You may be interested in reading her blog, "thegutsygirl.com" . About half of it is on crohn's, the rest is a personal journal, irreverant and funny. I hope you're having a good day today, and finding relief with your treatment. I wish you all the best. Kathryn's mom.

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  2. Hi Kathryn's Mom,

    Surgery is often the last option a doctor wants to give their Crohn's patient. When there was nothing else I could try, in an emergency situation, I had a resection and lost 12 inches of my small intestine. For some, surgery works. It did not for me. Never been in remission.

    Biologics is my next step. While it is still a young drug, the data available for Remicade is encouraging for young women who want to have a family. Just today I met with gyn- doctors for consultation (who specialize in higher risk pregnancy) and they were very honest and open with me. There are plenty of women who have continued through their pregnancy on Remicade and had healthy babies. At this time it is Class B. And if I (or Kathryn) chose to do this- we should get on the registry so they can monitor us and use us as data! Of course, being on meds is not what we dream about, but sometimes the benefits outweigh the risks...I was actually surprised, as explained by my docs, many of the meds we take for Crohn's are considered ok during pregnancy (prednisone, lialda, prilosec, pentasa, etc.)

    My ultimate thought process is: A drug exists that could help when nothing else has. Why not try? If my body can handle it, and it stabilizes my condition, awesome. If it works, I do not necessarily intend to stop my Remicade infusions if I get pregnant. My husband and I will make that decision when it's time to cross that bridge. Lots of differing data to debate out there, but that's how I feel.

    If Remicade does not work, or my body has an allergic reaction to it, I will go back to the drawing board with my awesome GI Doc and try something else. Women with IBD have babies all the time...and sometimes you can't wait until you have the perfect body, you can just strive for it.

    I can't wait to check out Kathryn's blog! Good job for being such a supportive mom!

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  3. Hi Rosie,

    Okay, that makes sense to me now. I went back through your posts and realized that I had read too quickly over the part where you said you had already tried all those other drugs, so yes, now it's time to bring out the "big guns".

    Anecdotally, a friend's son has had ulcerative colitis since about 15, and at 20 started on remicade. She stated that "now he has his life back". He is now 23 and doing well. Also, my 45ish neighbor told me she had crohns, and after a bowel resection and temporary colostomy years ago, is now well controlled with pentasa and steroids if she has flareups. She stated that during her two pregnancies she "had never felt better" and her crohn's symptoms had actually subsided. Two bright stories in an otherwise dreary day.

    It's wonderful that you, as well as Kathyn, have supportive husbands. After reading through comments on other blogs, that seems to be not always the case, so I'm very grateful for my son-in-law. I hope you have a wonderful weekend. Kathryn's mom.

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