So, I *thought* I was headed for remission. I *thought* I would be good-as-new in a couple months and ready to run a marathon (not that I run, but I would like to know that I could if I wanted to) and all cleared to get pregnant again–I am so longing for another baby.
Last Monday I dropped my Prednisone from 25mg to 20mg and tried it for 2 days. My symptoms increased so I was like “Oh hell no!” and increased my Prednisone to 25mg again.
But the damage was done. I opened “pandora’s box” when I dropped my Prednisone and my *beast* of an immune system woke up.
And it keeps getting worse, not better. My frequency has increased from 2-3 toilet sessions to 5-6 sessions. I have cramps and tenderness in my lower abdomen. I have to *run* to the toilet, as my urgency is back (thank goodness for depends). I have tenesmus (feeling like you have to poop but nothing comes out) and the straining is inflaming my hemorrhoids. And I’m not passing much if any stool, just bright red blood–so back to a liquid diet I go.
I talked to my awesome GI nurse in the midwest last week, and I have planned a trip to go visit family and friends and also see my old GI and a colorectal surgeon while I’m there. If I have the surgery to remove my diseased colon (more like *when*, but whatever) I want to do it at my old GI’s hospital because they are nationally ranked as a good hospital for colorectal surgery and I would be close to my support system.
I can’t believe I’m seriously to the point of considering surgery. It feels surreal.
For those who don’t know, my surgery would entail removing my colon in one surgery and fashioning a stoma (a hole in my abdomen where my intestine protrudes) and then I would be pooping in a bag for several months while I heal. Then I would have a second surgery to reattach my intestines to my anus, allowing me to poop out of my butt “normally”. But, it really wouldn’t be normal because without my colon food will pass quickly and I would have to go to the toilet as often or more often than I do now. Which is not desireable. But best-case scenario I would be “disease free” once my colon is removed and no longer need to take medications or worry about getting sick.
Worst case scenario is I might have constant infections or lingering disease in my anus that requires medications. I could also end up with a permanent ostomy bag (poop bag that I wear 24/7 for the rest of my life) if the reattachment surgery fails.
Even though I don’t want to deal with surgery, or a second surgery, or an ostomy bag, or pooping frequently as a ‘new normal’, or the potential complications…
I would still choose surgery over loading myself with drugs and feeling like sh*t for the forseeable future. I would rather live life on-the-go with an ostomy bag than live life on-the-couch with my diseased colon.
But there are lots of other things to worry about besides where and when to have surgery. Like how will Mr. MLACS take off of work to deal with this? Who will help us with BG? What can I expect during recovery–how long before I can lift my 34.5 lb kid into her carseat to go to the store/park/etc.? What will this do to us financially? And how will I come to terms with the fact that we are not having another baby (when that was the cornerstone of my ‘5 year plan’)?
I see a colrectal surgeon tomorrow (here in the South) regarding my fistula. And I see my current GI on Wednesday. Maybe current GI will give me some medication options, but I’m not sure he can or will do what needs to be done to get me well.
Mr. MLACS is pissed that I’m sick again and he was a complete dick about it last night. I really wish he could support me the way I supported him through his medical crisis–I was positive and very “it’s us against the world” and I did a lot of reasearch about what was going on with him. He has a sour attitude and can’t hide his frustration and anger, which makes me feel anxious and guilty on top of all the other sh*t I have to think about and deal with. It’s ok for him to have these feelings but it’s not ok for him to stew in them instead of dealing with them. And then blow up and heap his issues onto my already full plate–which he did last night. I was so exhausted and just… numb… I didn’t even cry. I’m just really disappointed in him and I doubt his ability to deal with whatever comes next. He just texted me that he can take off work to watch BG and take me to my appointment in the city on Wednesday. But if he’s going to use it ammunition to browbeat me during an argument (which he did last night) then I’d rather he just go to work so there’s one less thing for him to complain about. I don’t need his drama right now.