Saturday, November 23, 2013
I apologize for not posting for such a long time. Sometimes it's hard to do this, sometimes I feel so drained by the end of the day I don't want to do anything and other times I feel so good I want to go out and enjoy it for a change.
A few things have happened since my last post. As you may recall from Energy Rescue, I have difficulty with B12 like many FAPers. My B12 has jumped to 1095 after another month on B12 microlozenges, that's just 5 points below that to range! I definitely recommend anyone with low B12 to talk to their doctor about these microlozenges. My hemoglobin still remains below normal, even though a good B12 helps with absorption of iron. However, I have so many stools, and some body, that I don't think it can be helped. So I keep taking iron every time I eat. My last scope didn't show any ulcers or anything to explain how I'm continually losing blood. I believe my intestine becomes easily irritated if I'm unable to have a bowel movement or if I delay a movement for too long, in this case diarrhea and SBS are my friends!
I have even restarted taking the sulindac to reduce polyp growth.
In Ending the Family Cycle, I've mentioned my plans to have a surrogate and use only my eggs that don't have the FAP gene in order to have a child. Well as the time to try this continues to near, the more I've been overran with a desire for a child. Even to the point that I started double guessing my plan and considering risking having a child with FAP if the doctors refused to only use my non-FAP infested eggs. I don't condemn anyone's reproductive choices, there's nothing wrong to have a child with FAP. My personal decision had just always been then that if I can't have a surrogate and only use my non-FAP eggs, then I wouldn't have a child. I've based my personal decision on two things: I'd love to be the last person in my family with this disease and end it and secondly, I don't want to risk my child going through what I have gone through with so many complications from the surgeries even though the medical techniques and procedures are much better now.
In spite of this long standing decision, baby fever started to get me. But that fever may be over as another kind of feverish feeling has started.
The last couple of weeks I've experienced a sudden change in body temperature. Although my temperature has actually been low, I've been experiencing hot flashes. I've even enjoyed being outside in 32° weather with just regular clothing on, my only complaint was that my hands were cold. I'm going to contact my doctor, some have mentioned possible thyroid issues. Which got me thinking, there's a connection between FAP and thyroid. So I started reviewing articles about FAP again. I remembered risk of thyroid cancer but I didn't remember risk of liver, pancreatic adrenal, bile duct, and even a brain cancer!
What the hell!? As if claiming our whole GI tracts isn't enough, FAP has to try to lay claim to other parts of our bodies so we can possibly develop other cancers. Who the hell thought up this disease. There's plenty of other diseases I'd rather not have, namely any of the autoimmune diseases. Now I think FAP is another lottery jackpot of diseases, symptoms and complications just waiting to happen even more.
So needless to say, this helped my over zealous baby fever to return to a low simmer.
And after a few moments of self pity, I'm not worried that maybe I have thyroid cancer. I hope I don't, but I will get it checked out and I'll update with the results. Fingers crossed!
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.