That 7 days I was talking about in my last post turned into 3 weeks of hell. My flare really went into overdrive; I hadn't been that bad since last April or May. Even had to do more standard tests like C.Diff and parasite. Did another flex sig and the did a biopsy for rare virus.. CMS I think it was called. Turned out negative... kind of torn on that. One the one hand glad I don't have it but on the other would have been nice to have something definitive as to why my flare just won't end.
To top it off I had the flu from hell. I seriously hadn't been that sick since the swine flu. A few days into it I could hardly breathe and went to urgent care. They ran me through the gauntlet of X-rays, flu test, strep test, IV for fluid, and IV antibiotics. I was coughing SO hard for sooooooo long my ribs were very sore and sensitive. for WEEKS my ribs were sore! Every time I coughed ( which is lasting for weeks afterward!) I had to double over and kind of squat or it felt like someone was stabbing me in both sides and the lower back.
Then after the flex sig things started improving! In a week I felt much better. I had no blood or urgency for about two weeks! Haven't felt that good in... well... not sure when. However the last week has been hit or miss. We were hoping the Humira was kicking in and that was the reason. Now... not sure. Having random blood and urgency. Maybe every other day a couple times a day.
The plan is to stay on Humira bi-weekly for a about another month. If that's not helping then we'll go Humira weekly. If that don't work then they want me to go on Remicade. Cautiously optimistic the Humira will work.
I went to get a second opinion at the U of M. Really glad I did. The nurse practitioner I saw was very knowledgeable and so open to more things than hardcore drugs and surgery. That's why I was seeking another opinion. MNGI is very strict about what they allow their GIs to do and what studies they accept. I've seen many different GIs there and it's all the same story. You bring up anything about ways to help naturally (kefir or modified diet), studies about alternative regiments (Nicotine patch with Prednisone), or emerging procedures (Fecal Mater Transplant) and you get same answers.... there's no "science" on that, it won't help, that's an internet myth, we don't accept that study as "science", etc. It's not like I'm telling them I refuse to take my meds and I want to do these things. They won't even approve of any of it in conjunction with their regiments.
While meeting with the nurse practitioner at the U of M she actually brought up to ME about kefir, fecal mater transplant (FMT), and other natural things that can help. She was under no delusions these are cures but she's totally open to the idea of "lets try it... if it works great if not move on" and that's all I'm asking for. I'll be following up with a visit to see one of their GIs.
