A journey of a thousand miles starts with a single step, keep moving forward and never look back.
Tuesday, March 27, 2012
2 month check up
Went to Cleveland clinic yesterday for a two month check up and assessment. It was hard to go back. It is getting harder as time goes by. At the check up we scheduled the next surgery. It is set for July 17th. It's going to be a big one, approximately 6 hours and 7-10 days in the hospital. The doctor will either reconstruct the current jpouch or create a whole new one. Im concerned about using anymore of the small intestine, if it doesnt work. The doctor is optimistic it will work. He is the best in the country. This surgery will determine the success of the JPouch procedure. I'm at about 85% success rate now. I was told if the procedure was done right the first time the success rate is 97%, makes me pretty angry now. I am hoping this surgery works, I hate to go through any more and time away from my family for nothing. Hoping not to worry too much before then.
Tuesday, March 6, 2012
Returning to Cleveland
I will be returning to Cleveland in 3 weeks for a check up with my surgeon. Its going to be hard going back right now. I still have so much further to go this year. I have been doing ok. I am suffering from extreme exhaustion. I'm going to see if I need B12 shots. I know you can become deficient when you no longer have a colon. I have been having discomfort from the Seton, I called Dr. Remzi, he suggested I have a local surgeon remove it. I have not been in touch with my surgeon here since I've been back from Cleveland. I severed that relationship after finding out that I may have gone through a lot of this unnecessarily. I have contacted a new doctor at Freudert, a specialist is colorectal issues. So I keep moving forward, can't look back now. This is hard.
Wednesday, February 22, 2012
5 Weeks
It's been about 5 weeks now since I had surgery at the Cleveland Clinic. I'm still waking up feeling like I've been hit by a bus most days. It's been hard both physically and emotionally. I am tapering off most of the medications, and hopefully will be done with most by the end of the month. I'm still scheduled for a follow up appointment at the end of March. At that time the next surgery will be scheduled. I have been slowly getting back to some activities, it's difficult in this cold weather. Good news is I have gained at least 10 lbs in the last 5 weeks, so that's good.
Monday, February 6, 2012
2 Weeks
It's been two weeks since I left the Cleveland Clinic. It's been really rough. I'm slowly gaining weight and strength back. I've been walking the dog almost everyday, going a little further each day. It will be so much easier when it gets nice out. I'm not in much pain anymore, but still extremely exhausted. My follow up appointment is at the end of March, so I'll be going to Cleveland then. I have been getting back into my artwork with all my down time. I opened a shop at Etsy.com. Here is the link: http://www.etsy.com/shop/ckpc25?ref=si_shop
Tuesday, January 31, 2012
UC and Genetics
I found this statistic regarding ulcerative colitis and genetics. As you can imagine it has been impossible to imagine my children getting this disease. This made me feel better, none the less I pray every day.
Genetics play a role: if you have a 1st degree relative in your family with
Crohn's disease then your risk of developing it is 10 times higher than the rest
of the population. No need to panic however, the general population risk is 1 in
1500 which means that family history brings the risk to less than 1% - this is still
very low. Ulcerative Colitis is slightly more common but again the risk should be
less than 5% with a positive family history.
Sunday, January 29, 2012
Weekend
Loved the weekend with all my boys. Still not feeling up to going to the basketball games. Missing the games is really hard. Barely made it through Target for some much needed items. It was actually nice to get out of the house even for a short time. My husband is so patient with how slow I move. Still struggling with what foods to eat. Somethings just don't agree with me. I did enjoy a Starbucks today for the first time in a long time. All this is probably so boring. Should get my staples out this week. It's hard to imagine that they will probably be there again in 6 months..grrrr.
Friday, January 27, 2012
From the bitterness of disease man learns the sweetness of health. - Catalan Proverb
One week ago today was my surgery at the Cleveland Clinic. Everyday gets a little better. I am mostly just laying around, resting. It's getting pretty old. I can't wait to gain some energy and strength back. Right now I'm down to about 100 lbs. The home care nurse came yesterday, she will be visiting for a few weeks on and off. Keep moving forward one day at a time for now. Thanks for your support.
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