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.

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.

JPouch surgery

After visiting the Cleveland Clinic, seeing the specialist, being re-evaluated and treated. I have come to find there were several things that may have went wrong with my original treatment. Back in August, I was told my surgery would be completed in two stages, a total colectomy and JPouch construction. Then 12 weeks later would be the take down surgery. I was very ill and on a lot of medications at the time of my original surgery. This should have sent up an alarm that the surgery should have been extended to 3 surgeries. Doing the JPouch with the initial surgery may have been why it did not heal correctly. In addition to this, the take down surgery should have never occurred in November, because the surgeon should have seen that the pouch was leaking. I am writing this so others do their research to make sure they have the best percentage of a successful procedure. I don't want anyone to have to go through what I've been through. JPouch construction surgery should take place in three stages. This usually takes place within a years time. The best places to go in the US are either the Mayo Or Cleveland Clinics. Get a second opinion, if possible.

Best Regards Cleveland

I have left the Cleveland clinic. We didnt get discharged until around 4:00 pm et. I slept most the way home with the help of pain medications. I felt every bump in the road. It was painfully sweet laying in my own bed. Of course Richies curled up right next to me, the power struggle for sleeping space begins once again:) thank you all for your prayers and support. It is what truly keeps me going. It's going to be rough, one day at a time.

Too Good Too Pass Journal Posting Tonight.....

Thank you God for the blessings in my life, my husband Chad, son Parker, son Cade, dog Richie, my rocks, my foundation forever. Thank you for blessing me with wonderful friends and family, I don't know why sometimes. Thank you for watching over me every time the light went out and I needed guidance during surgery. Thank you for continuing to guide me down not a road of self pitty but one of perseverance, and determination to give back and help others any way that I can. Let go and let God (thank you Kim).

3 days post surgery

Feeling really sore still. I've been in the hospital for a week, had two surgeries, guess its going to take a little while to recover. The doctor said I should be able to go home tomorrow, Tuesday. It will make the world of difference to get home and sleep in my own bed. They will be setting up an at home nurse to come and check up on me for the next couple weeks. The staples will come out in a week. The next surgery will be scheduled in 6 months.