Crohn's Chronicles #crohns #colitis #bonemarrowtransplant

Whoo hoo, we have our own ribbon. Please feel free to use it. I also came up with a new blog name, Crohn's Chronicles. Sounds better than Crohn's Thursday.

So, let's see. How am I this week? Well, I just discovered that the coffee I'm drinking makes me sick. Now, I have my two cups at home every day and do just fine, but in the office we bought some fancy stuff that we put into the Keurig maker. Couple of sips of that and I don't need to worry about strictures. I thought it might be the fake sugar so I stopped that first. Then I thought it might be the creamer so I stopped that two days later. Today it was just black and I still got sick. I'm going to have to drink regular Yuban and stop the fancy stuff.

All my numbers are in order! Diabetes A1C 5.5, yay! Thyroid 2, yay! Heart rate holding steady between 80-90 and blood pressure is fantastic. Dang, this has been one month I'd rather forget. I felt like I had so many fires burning I didn't know which one to put out first!

Then, to top it all off, I had this bizarre swelling in my face. My eyes were carrying bags destined for international travel. I'm thinking it's a medication reaction and after suffering for a month or more, I discovered I was allergic to my new face cream. Good grief. All I needed to do was wash my face and wait for one day. So even that's back to normal.

Have you heard about the bone marrow transplant for Crohn's? Seems they were treating leukemia patients with bone marrow transplants and those that had Crohn's were cured of both diseases. They are recruiting here:


Summary

This phase II trial studies how well giving a donor bone marrow transplant (BMT) works in treating patients with refractory Crohn's Disease. We will select patients with severe Crohn's Disease and active inflammation despite the best medical and surgical treatments. These patients must be healthy enough to undergo a transplantation procedure. They cannot have an active infection, and their heart, lungs, kidneys, and liver cannot be failing. The transplant procedure starts with chemotherapy and a small dose of radiation, to weaken a patient's immune system so that it will accept bone marrow cells from another person. After that other person's bone marrow cells are given to the patient, immune suppressive medicines are given to prevent the new cells from being rejected and to stop those cells from damaging the patient. After the new donor cells start to work, blood counts will rise and the new immune system will start to grow. During this time, there is a risk of infection. Antibiotics and anti-viral drugs will be given to prevent infection. When the new donor cells are well-established, immune suppressive medicines are discontinued. We will examine parts of the intestine that were inflamed before the start of the transplant procedure, to be sure the Crohn's Disease has disappeared after the transplant. Patients will be formally evaluated for Crohn's activity at around 100 days after transplant, and yearly after that for 5 years.

For more information.

Application

I really really really want to do this but I need to be in better shape. My Crohn's is not in remission. The only two drugs I can take without an allergic reaction are Prednisone (not long term) and Humira (which is such a blessing.) So far this week I'm managing one hour on my stationary bike and 1 mile of walking. (All praise thyroid medication) Now my two dogs, Chelsea, who is 19 and Gus, who is 14, prefer to sniff the flowers rather than walk. Yesterday I walked so fast Chelsea stopped in the middle of the street, yanking me backward. I know she's old, but she is strong. Then, she shook her head until her collar flew off. Now, Chelsea is a pit bull, and my neighbors don't want to see her without a collar and leash on the street. She cocked her head at me as I tried to put the lead back on as if asking, What the hell are you doing?

Needless to say my fast walk turned into a slow walk the rest of the way home.

Still, I am SO MUCH BETTER THAN TWO MONTHS AGO. In December I couldn't do a quarter mile on my treadmill without complete and total exhaustion. I cannot describe how defeated I felt. I just assumed it was from the Crohn's disease. If I hadn't mentioned it to my doc they never would have done a thyroid panel and I'd still be an exhausted mess, with a heart rate so fast I was pooped before I even began. 

I am stoked.

If you've thought of bone marrow transplant to cure Crohn's, I'd like to hear from you. If you don't like to comment just shoot me an e-mail at [email protected].

(((hugs)))

Louann

Crohnies: Get your thyroid checked.

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