A Writer's Life Interrupted--Relapse #crohns #ibd

So, my bathroom both at work and at home has become my best friend. Sometimes, if only to cry. I'm sticking to my diet but did go off it last weekend for just one day, well, evening really. My husband and I will celebrate our 43rd wedding anniversary on Friday. (Remember, I was married REALLY young.)

My son and his wife treated us to an extremely fancy dinner last Saturday. The kind where the waiter stands next to your table and fills your water glass every time you take a sip.

Seriously. It was nice. We couldn't even afford the tip.

We had chateaubriand with truffle sauce, some kind of potato that was out of this world, asparagus to die for, and my daughter-in-law ordered a chocolate souffle. Now I can be expected to pass up the potato and I did eat all my veggies first before the meat. But...

I HAD to have a bite of that chocolate souffle. It was simply the best.

Then came the coffee. Along with the coffee came this tri-level silver dish sporting heavy cream Bailey's (alcohol included), regular heavy whipped cream, cinnamon, chocolate shavings, well, you get the idea. I let myself have one cup then threw caution to the wind and had two cups of the most delicious coffee I've had in years.

I knew I might not feel well, but I had no idea I would get as sick as I am. Everything from emergency bathroom trips in the middle of the night which I did not make. (My husband has threatened to show me the doggie door and put me out on the back deck if it happens again.) Of course he was just kidding.

I hope.

We won't discuss the vomiting and blood.

Oh, wait! I just did, didn't I?

Today is Wednesday and I'm no better. Thinner, but not better. If it doesn't clear soon I'm going on the elemental diet and wait for things to clear. *fingers crossed* It is so bad I am considering Humira again. *sigh*

So I went online to find out about new treatments. Eh, some were encouraging and some were not.

1. One company I was watching was Coronado Biosciences. They were using eggs from a parasitic worm to see if they help Crohn's disease. Unfortunately, the trial failed. Patients treated did not reach the target levels of improvement compared to a placebo.

2. The Edmonton Journal reports that a new study by U of A medical researcher, Shairaz Baksh, identified a drug called Gleevec, which is used for leukemia patients to slow the growth of cancerous blood cells, also reduced the symptoms of inflammatory bowel disease flare-ups, and the risk of death to 30 percent down from over 80 percent.

In addition to Gleevec, the anti-malarial drug called chloroquine, appears to help the body repair the damage done to the colon, and reduce the risk of death to 20-25 percent, again down from 80 percent.

In combination, both drugs may help keep inflammation down.

3. CNN reports that we have a much better strategy now to dealing with Crohn's disease. Bottom line is use the biologics to control the disease instead of symptom managing.

  I don't know who to believe. I HATE feeling like this, but I'd hate having to fight cancer AND Crohn's. Symptom management is more difficult, but at least you only have Crohn's not cancer, unless you get colon cancer.  Then CNN reports  the new treatments are full of hope for a better future.

All that said, all the reading I've done, ONLY a bone marrow transplant holds out hope of a complete cure so far. Everything else is a risk, but my problem is, I don't know which risk to take. Another factor is  someone I know/knew died from Lymphoma tied to Humira and Crohn's. That freaks me out.  That's the number one reason I'm trying the holistic approach.

4. Vedolizumab. A very interesting drug in that it targets only the DIGESTIVE system and not the entire immune system. Vedolizumab modifies the behavior of the disease, but they do not know the potential harmful effects of the drug as of yet.

5. Lastly, Harvard and Cambridge researchers uncovered new clues to Crohn's in that Paneth cells, the cells that line the intestines, play an important role in Crohn's disease.

I have to get sarcastic here: Gee, ya think?

These researchers are trying to break Crohn's disease into subsets by understanding the underlying mechanisms to develop a more targeted treatment.

*wipes sweat from forehead*

That must be some hard work there.

 Just ask a Crohn's patient and we'll tell you that the problem starts in the large or small intestine (or both in my case) and can move into the stomach, throat, and into the mouth itself causing ulcers. So how hard is it to figure out that the membranes lining our digestive system is where the disease begins?

So, what's the trigger?

Most Crohnies have had it start after a bout with an antibiotic. Others after a tough game of food poisoning. Clearly, the external stimuli needed to get Crohn's started and to activate the defective gene is something outside our bodies or, as in the case of newborns and infants, something they picked up from their mother. Perhaps she had a bladder infection, or maybe ate a bad potato.

I think it may be different for all of us. In others it might be the hormones and antibiotics they give to our protein supply such as cattle, chicken, pork, or turkey. Of maybe even GMO foods (genetically modified foods). Or maybe even pesticides. Just think of the pregnant mothers eating all that food filled with all those unhealthy items given to healthy animals so we can feed more people quicker with more bad food and that gets them even sicker so pharmaceutical companies can come up with more drugs to fix all the sick people who shouldn't have gotten sick in the first place.

Make sense, doesn't it?

Over 700,000 people in the US have Crohn's disease. And the numbers are climbing. You'd better hope it's not coming to your family anytime soon.

(((hugs)))

Louann

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