Hi all... It's been a pretty emotional ride for the past 3 weeks here. First I worried about
that potential neoplasia biopsy (benign, whew...). I've consulted with my GI, my CR surgeon and an ET nurse. Both my GI and my surgeon are strongly recommending a permanent ileostomy - total proctocolectomy (right - all of colon and rectum?) Last summer when I saw my surgeon she said she'd be willing to give me a temp ileo to see if things would heal up (fistula included). So after my scope 3 weeks ago my thought was, OK time for a temp ostomy. (I'd been told the bowel would likely heal up when not in use) Since that time I've been told repeatedly that if I do not agree to removing the rectum, they don't want to do the surgery.
If that biopsy had not been benign, it would have been a no-brainer! If I were hemorrhaging (like when I bled out half my blood a few years ago), it would be an easier decision. Even if I were in the bathroom 20 times a day it would be easier to consider.
But, none of this is the case. He said that my tissues are very severely ulcerated - about
1/3 of my colon. Very severe when it comes to endoscopy type of evaluation. Since I work from home most of the time, am anemic but not hemorrhaging, still working, still raising my girl... it's also considered moderate. My pain is controlled with pain meds, for the most part. I do not take them every moment of the day, just morning and again evening-time. Not every 4-6 hours kind of dosing. I get low-grade temps, rarely above 100.2-100.3. Because of the pain meds, I take stool softener in the evening and this narcotic/stool softener thing sort of allows me to slow up during the day and then softens the blow in the mornings to empty me out. Intermittent nausea/vomiting... Impossible to predict when or why. Last week I woke up vomiting, today I felt pretty good. Pretty little in the way of continence. I basically have to go and that's that. I miss the bathroom several times when I'm just in my own home. Sed rate hovers around 80. WBC - around 15. iron is still borderline anemic, even after the 5 infusions in june. (too much inflammation, he says)
I am just not sure that I'm ready for a permanent solution and they will not offer a diverting ostomy at this time. Am I crazy to just keep on like I"ve been doing? I mean, I frequently have "Crohn's moments' (accidents) but I guess I've learned to deal with that in most ways. With the iron infusions, I feel more energetic too. I've quit mtx because it was not helping - my scope was worse. I realized last night that my CRP was almost *normal* back when I was on Tysabri. So maybe I think that offers hope with vedolizumab comes out (not eligible for the trial)...
Anyway, I suppose I'm just rambling and getting my feelings out. I've been SO very confused these past few weeks. Today after learning they feel like it's "all or nothing" I feel more settled in the, "fine just leave me as I am" decision. My GI is willing to allow me to try things like LDN, statins (found a trial on the .gov site), and maybe even the parasites.
Just thought I'd throw it out there to you guys... If anyone has any words of wisdom or point that I've missed. It's so hard to make these decisions on my own. My family is nowhere near. I am single. It's just me, my girl, my cats and the bunny! If I wait for the surgery (until it becomes more an urgent situation, hence more clear it's necessary) she will also be older and more able to deal with me being gone for a while (hospital and recovery).
Sorry for the long, long-winded note. It just always helps to put my thoughts out there to you guys.
Thanks for reading if you made it through all that!
---Oh, I've also officially failed all meds. I'm not questioning if it was just my fear of PML that made me quit Tysabri. Not sure about
trying that again, but the other meds - all biologics, immune modulators, antibiotics, etc, I have failed.
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09
Post Edited (sr5599) : 8/3/2010 9:24:50 PM (GMT-6)