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.

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.

Surgical Breakdown

Here is a list of surgeries and various hospital stays over the past 6 months, I can't believe it, let me know if there are any questions regarding any one procedure: Surgeries: laparoscopic/incisional total colectomy 8/10 Intestinal obstruction repair 10/20 Intestinal obstruction repair 11/28 Take down J pouch 11/28 Seton surgery to drain Fistula 1/18 at Cleveland Clinic Surgery to create temporary ileostomy 1/20 at Cleveland Clinic Hospital Visits/procedures: 7/21-8/16 first surgery 9/14 emergency room in pain 9/21-9/25 left side pain, possible obstruction 9/27-10/3 rash, biopsy leg (Erythema nodosum)  10/20-10/24 second surgery, intestinal obstruction 11/13-11/15 anal infection, fistula 11/26-12/6 third surgery, intestinal obstruction, JPouch connect 12/7-12/9 procedure flexible sigmoidoscopy 12/16 procedure flexible sigmoidoscopy 1/3 procedure flexible sigmoidoscopy 1/4-1/13 infection, pouch problems 1/15- to present, surgery and treatment at Cleveland Clinic

Sunny in Cleveland

Things are looking good today. Still feeling the pain, mostly from the incision(about 6 inches from my belly button to my pelvic bone....oweee)I am slowly moving to a soft diet to transition to solid foods. I haven't been eating solid foods since around the end of November. If everything goes well I could be going back home as soon as Tuesday. The plan will be to go back home and heal for the next 6 months. At that time I will be accessed and hopefully move forward with the next procedure (JPouch reconstruction).

Surgery # 5

I am in Ohio at the Cleveland Clinic. Early yesterday I had surgery to divert the shiny new JPouch I had connected back on November 28th. The JPouch had a leak and structural issues, it will need to be redone. I have had several complications leading up to this point. My doctor back home in Wisconsin referred me to Dr. Remzi for advanced treatment, and to access my treatment moving forward. Today I am in a lot of pain. I am on a liquid diet and sleeping most the time. I will probably be here for a few more days.

Why Blog?

I wanted to get my blog up and running asap so I can get all my wonderfully supportive followers up to date on my health issues and progress. My goal is to create a site full of stories, knowledge, and support to people that are living out similar health issues, those seeking information for a loved one, and ultimately a place to find support and healing. So more to come on all that.