You can have the last cookie

While dealing with my total colectomy, we had some very dark days. Days we felt weak and broken. We always had each other to lean on, although some days it felt more like we were equally propped up against each other and one strong wind could take us both down.

We have made it a long way from hospital stays, ER visits, blood transfusions and medication schedules. Those are all in the past. 

Many people tell me how strong I am but I am nothing without my support system. Most of you reading this have played some part in my recovery from life with colitis. My colon is gone, but there are still trials we learn and overcome every year. I do my best to tell everyone how I am not the strong one- I am a product of the love and support I get from all of you. 

When I was really sick, a sweet friend who is like a sister to both of us, organized a book of love and intentions. She was able to get written notes from a number of loved ones, cheering us on from all around the country. She presented it to us during a benefit show other friends hosted to help pay my medical bills. (Is this real life!? Who has friends like this?) I am extremely lucky to have all this support and love to get me though those darker days.

We could never repay you or thank you enough. In honor of all the love and support we've had over the years, we will be leaving meaningful sayings (including, "you can have the last cookie") that got us through those dark times, during our dirtbag roadtrip. The country could use a little pick me up. We hope to make someone smile. And if we do, please know you played a role in it, too. Thank you, thank you, thank you! 

Update on Pouchitis Vs. Crohn's

After a number of tests, we've been down graded from possible Crohn's to very bad pouchitis. This was unbelievable to me after seeing the actual holes in my small intestine. But, let's go with what the specialists say.
They put me on suppository steroids, UC oral medications, pain medication and no real information on diet or lifestyle change. I'm not a fan of taking any steroid at this point because of the deadbone issue. (To catch you up on that, I was experiencing sharp pains in my left knee when I would walk, stand, or even straightening my leg while in bed. I went to the doctors, so many doctors, who did some tests, so many tests, for them to tell me that part of my bone is showing signs of necrosis, or death! Likely caused by prolonged use of steroids. This is commonly found in women in their sixties or woman who have been on steroids for other chronic illnesses.) So now I'm really not a fan of steroids.
The doctor assured me that the suppository will not affect the bone issues.
Because I was not told to change my diet (I had gone back to my regular, healthy-ish diet that included grains, beans, carbs, and sugar), I kept eating like normal and taking all my medication, with very little changes to my situation.
We tried many weeks of antibiotics that lead to C. Diff and a whole host of additional issues.
Months went by with me going from specialist to specialist for digestion and bones, and getting this test and that test. But nothing was helping. Even the tests would give us some information but still no clear answer.
I finally was sent back to my General Practitioner to refer me to pain management. I was just expected to live with pain and not being able to walk in my 30's until it got so bad to require surgery. I told her I need something. I couldn't walk, I couldn't drive my manual car, I couldn't walk my dog. I couldn't live like that. I asked for a cane. She obliged and offered another suggestion. "I have a book I'd like you to read and try the diet. You'll be ahead of the game since you've already done Paleo, but there are a few more restrictions. But I think it will help."
She was so right. The book was The Autoimmune Solution by Dr Myers, and the diet restricted grains, dairy, beans, corn, potatoes (same as the Paleo diet), but also nightshade plants (such as tomatoes, peppers and eggplants).
Within a week, I didn't need the cane and the pain in my abdomen began to finally subside. Unbelievable. The specialists still don't believe the diet makes a difference but I'm living it.

Here we go again

Last week I was admitted to the hospital. Rectal bleeding for about a month. It's a thing. I had already talked to my doctor- really, even getting to a doctor is kind of a big deal for me. At this point in my medical life, I should be as close to normal as I could be. I had my colon removed, for crying out loud! When I went to the GI, I told him my symptoms and he wanted to do a scope. The thought of a scope with all the pain I've been having caused a lot of anxiety. He scheduled me for the next available appointment- two weeks out!

I tried. For a week, I tried to keep it together. I ate low fiber at first. No change. I ate clear liquids (basically jello, broth, and apple sauce) and still no change. I tried to move my appointment up a week and still nothing from the doctor. I called the advice nurse (brilliant move on my part) who advised me to go straight to the ER- do not pass go, do not collect $200! Straight to the ER.
I always say, compared to colitis, this is not really a big deal. I'm not light headed, I don't feel like I've lost a lot of blood. Could it really be ER worthy?

After sitting in the ER for three hours, they finally got me a room. With in minutes they had my IV hooked up and were sending morphine direct to my blood stream. Ahhhh sweet relief.
That night was kind of a blur. We did an MRI and then waited for the scope the next day.

The nurse overlooked the "prep" that I knew was looming. I opened my big, fat mouth and asked if I would have to do an enema, as I knew I would. Of course they called for an enema! Years of UC have trained me for these tests. It's second nature.

As I started my dreaded enema, while in the pain I was in, knowing it would not be comfortable, I began to feel a horrible burning. I ran to the toilet, IV pole trailing close behind, and could barely stand it. For the first time ever, I pulled the emergency line next to the toilet. When a voice came over the intercom, I just bellowed, "I need help!"

Every person on my team came running in, the nurse was last with a syringe of morphine, finding me hunched over on the commode.  She asked if she could help me to the bed but I couldn't move. She plunged the fluids into my IV and I sat until I could wipe the tears from my face. I slowly moved to the bed.

She called off the rest of the enemas for the day.

When I finally saw the doctor who was to preform the scope, it was already approaching 3pm. I-85 was shut down the night before while we were in the ER and my GI was stuck in street traffic dealing with the freeway closure. I hadn't eaten or had anything to drink since yesterday at midnight. I turned-on my side in a small room full of the scope team (is that a thing- because there was a whole team in there), ready for my scope, they put me to sleep.

The test should only be about five to ten minutes. By the time I woke up, it felt like it could have been a hour. They sent me back to my room with pictures from the test. I had never seen anything like it.

We speculated but the doctor was quick to follow with possible explanations. Either we have a sever case of pouchitis (inflammation of my j-pouch) that is leading to fistulas (holes), or we have Crohn's disease.

I got to see a couple friendly faces. My old surgeon came around to check on me. When he poked his giant head in my hospital room door, it was like seeing an old friend. I was relieved when he said I'd have a long way to go to before requiring surgery again.

I'm home now after spending four days in the hospital. We still don't have the test results back yet. I'm taking medication as though it's pouchitis- antibiotics and pain medication. But everyone seems to be concerned that is it actually Crohn's disease.

Today we wait. Tomorrow we hope for answers.