It's been a few weeks since I wrote. I have been hesitating to write until I figured out everything with my surgeries and could just do one post. It is also Crohn's and Colitis Awareness week this week and I've been blasting Facebook with posts nonstop with facts and articles and pictures.
I am a few days out from another surgery. Monday at 1030a I will be having an O.R party with not one, but TWO surgeons. Hey, when I decide to do something, I do it big. So my OB/Gyn will be there to take out my girly bits that will no longer be baking anything and are not faring well with all my GI and autoimmune issues. If you've been following, my immunosuppressants have caused advanced precancer cells to form faster than normal and something has caused my left fallopian tube to blow up like a sausage. So that's fun. You don't think about the relationship all your organs have with each other until one is missing. They are all millimeters away, support each other and share connective tissue. Take something away and that change in anatomy and that void causes things to shift, no longer sit in the same position and can cause issues. For many women, their uterus' tip dramatically post colectomy because that support is no longer there. That can then lead to horrible periods with extreme pain and blood loss. So all things considered, it's coming out. If they would take my spleen and gall bladder I'd let them do that too. But they won't. =(
So on Monday, my Colorectal will open me up and separate everything from my guts and Jpouch then my GYN will take out all my cash and prizes, leaving my ovaries so I don't turn into a menopausal maniac. Although, hot flashes would be welcome as I am always freezing. ;-)
After she's done, my Colorectal is coming back to give me another temporary
loop ileostomy. I'm not really happy about it because the goal was always to have a Jpouch but my chronic
pouchitis has progressively gotten worse and is antibiotic resistant plus the cuffitis causing pain and bleeding has gotten to be too much. My pouch needs to rest and heal and it just can't while I have all my plumbing hooked up. As long as I have that 2cm of tissue left I am prone to flares. So essentially I'm having a UC flare in 2cm of what's left of my colon. And my mouth is full of canker sores again so that's pretty typical of my colitis flares. Not fun right now for me. Not at all.
So Monday will be a little tag team surgical party. I know how to be sick people. I do it UP!!!!! On a positive, the weather is downright freezing so I'll be nice and stoned in the Hossie.
My surgeon is hopefully going to go in through my old ostomy scar. It worked ok, I wish it had been a bit lower but oh well. Needless to say, the ostomy nurses at Pre Op marked me. Over my scar. Phew. Good thing. Now my surgeon will know where to go in! :-/
If you have time, check out all the stuff online regarding #IBDawarenessweek. There is a lot of info out there and awareness=understanding. There is a lot on FB, twitter and Instagram. Tomorrow is the last day so it's been nice timing for me to reflect on what I've been through and how my struggle continues. I can't help but wonder at what point will I feel normal. Not have doctor appointments be every 6 weeks. Not have a bathroom drawer full of meds and topicals. Not spend hundreds of dollars on Rx copays. Not have to choose between my pain and pain pills because I have to drive, or do homework or be alone with my kids. Not have guilt because I'm a sick mom. Not look like shit because I'm a #tiredhag. Not have my hair fall out because my nutritional absorption sucks. Not be anemic. I could go on and on.
All I can think going into Monday is that this is what's going to work. I'm not nervous because being cut open doesn't phase me anymore, but I'm upset. I'm upset I have to go through an ostomy adjustment AGAIN. Mentally it will be easier this time, but physically it will still suck. And how many times can I get cut open. I was lucky that my scars healed so well, but there's no telling what the rehealing will do to them. FrankenBelly part deux. My weight will fluctuate again. I may be chronically dehydrated again and almost be blacking out every day. Plus, there are no guarantees. I could get reversed in a few months and all the pouchitis and cuffitis could come back. And then it was for nothing. And we don't have a plan if that were to happen. I refused to discuss anything further than this surgery and letting my guts heal.
I planned on spending this weekend doing last minute holiday stuff before I went into the Hospital but we got hit with nasty weather so there won't be much driving going on. I really need a pedi. And a bang trim. I can't get admitted looking all crazy!!!!
Ok everyone...I will be back post Op. I'll easily be in 5 days and I'm sure I'll have lots to share when I get out. Have a great weekend everybody! Thanks for reading!
It's been a few weeks since I wrote. I have been hesitating to write until I figured out everything with my surgeries and could just do one post. It is also Crohn's and Colitis Awareness week this week and I've been blasting Facebook with posts nonstop with facts and articles and pictures.
I am a few days out from another surgery. Monday at 1030a I will be having an O.R party with not one, but TWO surgeons. Hey, when I decide to do something, I do it big. So my OB/Gyn will be there to take out my girly bits that will no longer be baking anything and are not faring well with all my GI and autoimmune issues. If you've been following, my immunosuppressants have caused advanced precancer cells to form faster than normal and something has caused my left fallopian tube to blow up like a sausage. So that's fun. You don't think about the relationship all your organs have with each other until one is missing. They are all millimeters away, support each other and share connective tissue. Take something away and that change in anatomy and that void causes things to shift, no longer sit in the same position and can cause issues. For many women, their uterus' tip dramatically post colectomy because that support is no longer there. That can then lead to horrible periods with extreme pain and blood loss. So all things considered, it's coming out. If they would take my spleen and gall bladder I'd let them do that too. But they won't. =(
So on Monday, my Colorectal will open me up and separate everything from my guts and Jpouch then my GYN will take out all my cash and prizes, leaving my ovaries so I don't turn into a menopausal maniac. Although, hot flashes would be welcome as I am always freezing. ;-)
After she's done, my Colorectal is coming back to give me another temporary
loop ileostomy. I'm not really happy about it because the goal was always to have a Jpouch but my chronic
pouchitis has progressively gotten worse and is antibiotic resistant plus the cuffitis causing pain and bleeding has gotten to be too much. My pouch needs to rest and heal and it just can't while I have all my plumbing hooked up. As long as I have that 2cm of tissue left I am prone to flares. So essentially I'm having a UC flare in 2cm of what's left of my colon. And my mouth is full of canker sores again so that's pretty typical of my colitis flares. Not fun right now for me. Not at all.
So Monday will be a little tag team surgical party. I know how to be sick people. I do it UP!!!!! On a positive, the weather is downright freezing so I'll be nice and stoned in the Hossie.
My surgeon is hopefully going to go in through my old ostomy scar. It worked ok, I wish it had been a bit lower but oh well. Needless to say, the ostomy nurses at Pre Op marked me. Over my scar. Phew. Good thing. Now my surgeon will know where to go in! :-/
If you have time, check out all the stuff online regarding #IBDawarenessweek. There is a lot of info out there and awareness=understanding. There is a lot on FB, twitter and Instagram. Tomorrow is the last day so it's been nice timing for me to reflect on what I've been through and how my struggle continues. I can't help but wonder at what point will I feel normal. Not have doctor appointments be every 6 weeks. Not have a bathroom drawer full of meds and topicals. Not spend hundreds of dollars on Rx copays. Not have to choose between my pain and pain pills because I have to drive, or do homework or be alone with my kids. Not have guilt because I'm a sick mom. Not look like shit because I'm a #tiredhag. Not have my hair fall out because my nutritional absorption sucks. Not be anemic. I could go on and on.
All I can think going into Monday is that this is what's going to work. I'm not nervous because being cut open doesn't phase me anymore, but I'm upset. I'm upset I have to go through an ostomy adjustment AGAIN. Mentally it will be easier this time, but physically it will still suck. And how many times can I get cut open. I was lucky that my scars healed so well, but there's no telling what the rehealing will do to them. FrankenBelly part deux. My weight will fluctuate again. I may be chronically dehydrated again and almost be blacking out every day. Plus, there are no guarantees. I could get reversed in a few months and all the pouchitis and cuffitis could come back. And then it was for nothing. And we don't have a plan if that were to happen. I refused to discuss anything further than this surgery and letting my guts heal.
I planned on spending this weekend doing last minute holiday stuff before I went into the Hospital but we got hit with nasty weather so there won't be much driving going on. I really need a pedi. And a bang trim. I can't get admitted looking all crazy!!!!
Ok everyone...I will be back post Op. I'll easily be in 5 days and I'm sure I'll have lots to share when I get out. Have a great weekend everybody! Thanks for reading!
