A short lived rebound...

Monday, September 5th

It seems that my good response to the Remicade treatment after leaving the hospital was very short lived. Unfortunately, my symptoms seem to be returning. I have spent all of Labor Day weekend in bed with severe cramping and other abdominal issues.

This is very disappointing.

Shannon is searching the Internet for alternate therapies besides a colectomy. I am hiding under the covers watching netflix in complete denial.

When I first woke up this morning, I thought I was feeling pretty good--or at least better than I have over the last few days. Not so. As the day goes by I am slowly sliding back down the hill, or maybe it's a mountain?

I have a follow up appointment with my colon doc tomorrow (Tuesday). We shall see what he has to say.

I am wondering how much more of this I can take before I demand a colectomy. I am missing valuable time with my family.  I HATE being sick like this.

Shannon found a place in the UK where they use whip worms to treat UC and other autoimmune issues. Sounds promising but I'm a little leery of anything involving the word "worms". I told another friend I was willing to eat dirt if they told me it would help, would worms be that different? I should keep my mouth shut...

I've tried various homeopathic treatments. Some have provided me with a little relief in cramping but none have resulted in any healing or remission. Before starting Remicade, I tried colon cleanses and vitamin, mineral supplements, changed my diet drastically and read countless books on the subject none of which ever really made a big difference for longer than a few weeks.

Now, do I try the whip worms (uhg) or just have the dang colon removed? How long do I have to suffer through yet another treatment that may not work? Removing my colon seems like a big deal to everyone around me. It's seems quite simple to me: it's not doing it's job, it's diseased, removal will cure it.  If my colon were an employee, I would have fired it years ago!

If I never have to use the bathroom again for #2 I'd be a happy camper. The pain makes me see stars.
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Tuesday, September 6th

I just got home from meeting with my doctor about my non-progress since leaving the hospital. The short of it: it's time for surgery.

I am waiting for a call from the surgeon to schedule the procedure. We are hoping, the sooner the better.

It's funny, even though I was prepared for this, it's still a bit unsettling. I feel very good about my doctor and the surgeon and completely trust their advice and skills. You know the old saying-- minor surgery is on someone else, major surgery is on you...

I do feel at peace with the fact that this will end my battle with UC and take away my high risk of colon cancer too. I will no longer have chronic pain or 20 trips to the bathroom a day. I will get my life back.

I will update when I have a surgery date.
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Hello friends and family,

Just wanted to let u guys know that Monnie has been going downhill with her health again. It started Friday night and after spending the weekend in bed she is clearly no better and the medicine partially worked for about 3 weeks but has now worn off and is no longer effective fighting the disease.

We saw the doctor today and he has recommended surgery to remove the colon.

We are waiting to hear from the surgeon on when it will be . Possibly later this week or next week we just don't know yet.

She is in pretty good spirits and has some good pain killers to get us through until the surgery.

She's very ready to be done with this disease and it is the only known cure. We have left no stone unturned looking anywhere and everywhere for a good alternative but there is none.

She's ready to get it done and get on with her life.

Just wanted to let our friends know what's going on and say thank you for all of the prayers, thoughts, meals, help with picking up kids and all the things great friends have done to help us.

It will be a long month but there is light at the end of the tunnel and she should recover over 4-6 weeks after about a 3 day hospital stay. They will give her a colastomy bag but she will no longer be in pain.

We are looking forward to the end of this and her getting back to living life. it's been a long 7 year battle. When they first told us about the possibility of this surgery it seemed too much to comprehend, but after watching her suffer we are ready to be done with this disease.

Thanks again for all of your support.

Take care

Shannon