“All disease begins in the gut.” – Hippocrates

Wednesday, June 30, 2010

The Value of Community, Advice in the First Weeks after Diagnosis

I've been writing back and forth with a woman (AP) whose husband (JP) was recently diagnosed with Crohn's. Our conversation has brought up so many helpful points that I asked her if I could share them on my blog. She graciously consented. So the next few posts will use points from our emails back and forth as food for discussion here. I've removed any information I thought may identify her or her husband.

I have entitled these posts, 'The Value of Community' because I think they illustrate how important it is to surround yourself with people who know what you are going through, and care enough to help.--Community matters.

Here's how the conversation started:
My husband has been "sickly" for about 10 years or more. [snip] (He experiences) fatigue, digestive issues, reaction to eating. (Sound familiar?) More recently his symptoms have increased to the point where he is no longer functioning fully. He has joint pain, mouth ulcers, anemia, folate deficiency, constant diarrhea and gas problems, fever/chills and extreme fatigue. [snip] They found ulcers on his colon. They said it was most likely ulcerative colitis or Crohn's but would need to get back the biopsies and blood work before making a diagnosis. The GI's nurse called yesterday and prescribed Asacol...

AP asked if I might be able to provide some guidance since they were new to the condition, the treatments, etc.

A bit of context first: My wife and I were alone when symptoms like JP's first hit me. We were in a new town, new job, renting for the first time in 5 years--we had only one couple nearby we called friend, and they lived 45-60 min away, depending on traffic. The symptoms of Crohn's and Colitis can be isolating, even when you have a good community of friends and family, so for us to be alone made it even more isolating. That's why I enjoyed so much the opportunity to talk with AP--I got a chance to be the community for them that I so wanted when I was that sick.

My initial response to her is below. In the coming weeks, we will address the substantial issues that have come up in our conversations.

...Your husband's story sounds familiar. I've gone through a lot of what he has (and will), though if he has mouth ulcers, it's most likely Crohn's (mine is Colitis--same inflammation, but Crohn's can afect any part of the digestive system whereas Colitis is confined to the large intestine), but you should have him go through the battery of tests to make sure both you and your Dr know what it is. I went through Asocol, Balsalazide, Prednisone, Imuran-- none of them worked for me.

Note: I've seen some out there advocating that you not go to the doctor for whatever reason (there are many out there). Doing that can put your life at an awful risk. I advocate natural healing from Crohn's and Colitis, not recklessness.

As H may have mentioned, I have found a natural way of controlling my condition. The book I recommend on my blog (that explains what worked for me) is Breaking the Vicious Cycle, by Elaine Gottschall. It's worth every penny. [snip]

But first, here's what you can likely expect from traditional medicine...

The usual Allopathic (read: traditional lab-based medicine) treatment course will be this, in order of least to most intrusive (though some of the drugs differ for Crohn's):
1. mesalamine (Asacol, et al.)
2. maybe balsalazide (Colazol)
3. Prednisone (corticosteroid, for getting inflammation under control if #1 and #2 don't work)
4. Imuran (imunosuppressant, the same medicine you would have if you had an organ transplant, to prevent rejection)
5. Remicade (there are others here, too...)

It's really a shotgun approach, and no patient responds the same to any of the given treatments. Further, Asacol (for example) may work for one flare up (activation/aggravation period of symptoms), and not for the next in the same patient. Ugh! So with the above treatments, there is always risk that they might work or they might not, even if they've worked in the past. Be aware of this, and make sure you are clear on the side effects of each medication before he takes it. The doctor should be willing to sit with you and explain the benefits and risks of each. I recommend using the manufacturer's literature as a guide for this discussion--literally have it in front of you when you talk with your Dr. about each of the drugs he/she suggests.

While on any of these drugs, the doctor will want to draw blood frequently to monitor different things depending on which medicine he's on (inflammation, liver function, blood cell counts). You should ask the Dr. about these tests...in fact, you should feel free to ask your Dr. any question you have and don't let him/her leave until you are utterly satisfied with the answer--treatment of this condition takes teamwork, and the Dr. should work with you and your husband, not ON your husband, you know?

Note: I emboldened the sentence above and the one below to illustrate a point. Both Crohn's and Colitis treatment takes teamwork. It's not like dentistry, where a Doctor can see your cavity, ask you to open and say 'Ah!' while he or she fixes it. Successful treatment requires teamwork. You need to be an equal (in standing, even if not in knowledge) partner in your treatment. If your doctor doesn't entertain your questions, empower your ideas, and walk along side you in your illness, then you need to talk with him/her. If, after that talk they still won't treat you as a partner, then find another doctor.

 I can get you started learning about the condition. (Notice I try not to use the word 'disease'. First, it's unclear that UC or Crohn's is a disease, per se. And Second, these labels are not good for morale, long term.) Becoming an 'expert' will help both you and your husband in the course of his treatment...

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