Post July Surgery Status

Thank goodness I write all my passwords down. It's been a while since I posted, so I needed to look it up. I had a 7 hour long reconstructive surgery on July 17th in Cleveland to repair the leaking JPouch. My doctor ended up removing the pouch completely and created a new one, using that much more of my small bowel. The surgery itself was a success. It's a month later, and I'm so much further along then I was back in February. There have been a few bumps in the road. The day after I got my staples out, my incision opened. Very scary to look down and see a gaping hole. It still hasn't completely closed, limiting much of my activities. I also have been getting dizzy spells upon standing. Seems I am anemic, so trying to amp up the iron in my diet. Right now the take down surgery is scheduled for October 17th. I first will need to have a pouch exam to make sure there are no leaks and then I'll be good to go. My diet is going to forever be a challenge to see what foods agree with me and which do not. I will have a short bowel for the rest of my life, it will be a challenge. I plan to get back to running as soon as I can after the October surgery.

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.

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.

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.

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

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.

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.