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.

Silver Linings and Thorns

The only way to get through the roller coaster of UC, is to look for the silver linings. Everything will come and go. Even though, sometimes it seems like things just keep going... The pain will subside at some point.

The problem with living your life like that, is that when you get a rose, you often see the thorns.

Over the last week, my bathroom visits have drastically reduced. At night, especially, I'll get up ONCE! The whole night. I haven't been able to do that after a normal sized dinner for I don't know how long!

While in the bathroom at 3:35am the other day, I was thinking about this. Immediately after congratulating myself, in my mind, I got a twinge. Twinges are normal; Gurgles are normal; Any odd abdominal noise or feeling has become normal. But this twinge awoke a fear in me.

The thorn- What if I have a kink in my J-pouch!? This isn't UNcommon. Most people with the surgery find they have a kink at some point. It sounds painful and one of the first signs is slow movements...

By the time I woke up, I had forgotten about the twinge but it made me think, when will I not have the "thorns" popping up? When will it just be a normal tummy ache?

To make it worse- My heart palpitations are back! What is that!? Hahahaha

Prozac and Panic Attacks

I started working full time again and thought I was getting everything together. I still have pain in my belly, I go to the bathroom a lot, and I haven't slept through the night in ever!

I feel like the normal stress of a full time job that everyone has, with the sleepless nights and sporadic eating is just too much to deal with.

I went to behavioral health and they upped my meds and sent me to a therapist. They also want to see if I am lacking in any nutritional values.

I'm just saying; a year ago, I had my reversal done. I still feel that I am recovering and I don't know when I will be done recovering...

At least work is extremely supportive.

Colitis/Colonless Curse

For the last eight years, my weight has served as a significant indicator of my health. To file for disability one has to document substantial weight loss; 10% over a 60 day period. This is easy for those with an IBD- and now I know it's easy for those without a colon. When I hit 15 pounds lost, I know it is time for drastic measures. My "healthy weight" has a 5 pound window. I haven't held at that weight for over a year now.

Most people complain that their pants don't fit. Lunges in freshly dried jeans may help you; not me. I get comments all the time about my weight. Others, I would imagine, welcome skinny jokes. To me it is a constant reminder of my disability.

When did it become ok to comment on someone's weight? Does everyone feel they know me well enough to say how skinny I look? If I were over weight, would it be ok to say, "Gosh, you're looking fat!"? It's the same to say, "Gosh, you're looking skinny," to someone without a colon (or an IBD)!

I'd love it if a few cheese burgers would do the trick (I get that suggestion all the time). I wish my pants fit right. But as hard as it is for someone who over eats to be called fat, it is just as hard for someone who can't properly digest food to be called skinny.

You can't stop eating? Well, I can't stop my food from rushing through my gut.

Leave me alone and I'll leave you alone. Deal?

Unfortunately, the people who usually read this are close enough to make fun...
(XOXOX)

Third time's the charm?

March 1st was surgery. I really want to say it is the last surgery but if I've learned anything in the last nine months, there is no telling when this will all be over until it's over!

We are still riding the tax refund wave so I was able to pay our lowered co-pay for the hospital stay. While we were in the business office the morning of surgery, I read through the paper work the office lady gave me and it said "Liquid diet day prior to surgery"! I guess the celebratory burrito was a bad idea...

I told the nurse and really thought they were going to send me home. But before I knew it, I was flat on my back getting wheeled into surgery. I saw doctor Nic before I went under. The last thing I heard was the discussion of medication needed during the surgery. "Well, I'll be here if you need more..."

Dr Nic said it could be an hour or four, depending on how difficult it is to find the leak. Unfortunately for him, it was pretty difficult to find it! Four hours later he sent the "all-good" to Eli in the purgatory. I always feel so bad for Eli having to wait there while I'm getting the best sleep of my life!

When I woke up, all I could get out was a moan. They wheeled me to my room, raised the bed to the height of the stretcher and asked me to "skooch!" WORST FEELING EVER!

When they brought Eli in to the hospital room, my moans had increased with the pain did. The rest of that night was a blur after the nurse said, "Just keep pushing that button! It will kick in..."

The perfect shade of pink!

I can't tell you how many colonoscopies I've had in the last eight years. If there is such a thing as a good colonoscopy, it is when your colon is only an inch long.

I agreed to let the doc take one more look before I pulled out my tube and the quickest way was in the office without any medication. I laid on the table, pants around my ankles, TV screen in front of me. After messing with some equipment, the exam began! For not being sedated, it wasn't THAT bad.... Well, lets just say, I've had worse exams!

He asked if I could hold on while the nurse gets the other doctor. Apparently, this was too good to miss. The door flung open behind me; we waited; door still slightly open. "It is more entertaining when I have something to watch..." So, he continued with the exam and explained everything we could see.

I have seen my colon before- Nasty, red, white, ulcerated colon. Not this time. It was the perfect shade of pink. It looked fantastic. Until I saw the BLACK HOLE!! At the very top of my j pouch was a little black hole. Maybe the size of a pinto bean. Just pulsating and breathing. "That little guys is what is causing all our problems."

When the second doc finally came in they began to discuss... Unfortunately, they can't just clip it. If they did it in the office, the tool they use is the size of a fist! So, we decided to go back into surgery.

March 1st.

The time has come!

I called my doc on Thursday to leave a message. I don't recommend you leaving a message like this unless you have a good relationship with your doctor...

The nurse assistant answered the phone and I politely asked to leave a message for the doc. She recorded my name and phone number and asked, "What's the message?" Without hesitation I said, "Can you just tell him I am going to rip this tube out if he doesn't take it out soon." "Oh my! Are you in a lot of pain?... I am so sorry. I'll let him know."

Of course he called back and acted like he just got a message to call me until he said, "How about, before you rip it out, I take one more look inside and see what our options are?"

I love my doctor!

Testing, one, two, three, four

I just had my fourth exam in this horrible room at the hospital. Three gastrgrafin enemas and a fistula gram. They are pretty much the same exam- they just inject the dye in different ways!

My last gastrografin brought me to tears. The doc promised they would not hurt me too much this time... I was not impressed when I had to walk into the same room as last time for the fistula gram. The fistula gram- indifferent about it. I did love that my surgeon and the technician were both in the room and were chatting it up about my intestine. "Do you think it's at the top? Are you worried if it's at the top?" And Nic knowing I'm listening to everything they say, responds, "Well, I'm not worried about it! I just wonder if it is..." I really didn't walk away with any more knowledge than when they aren't in the room, it was just unusual.

What have we learned from this exam? Not a thing... except that it is way better than the gastrofrafin. Still have the draining bag. No call from the doc yet.

It could be worse

When I had the j-pouch surgery, I found comfort in the thought that it could be worse... People with colon cancer and kind of forced into getting the surgery. I'd imagine they were admitted to the hospital and have to have emergency surgery; when they wake up they find out they have no colon, they have this bag that holds their poop and they are stuck.

I always found comfort that it was just a temporary situation and it could only get better.

I had some abdominal pain for about a week. I called the advice nurse who said, because of my recent surgery and the consistent pain, I have to go to the ER. CT scan, X-ray, Gastrografin Enema (number 3!) and they found a leak.

One would think that after your third gastrgrafin, you would get used to it. You know what to expect by the third one. During this exam, I cried the whole time on the table. I found that if you are comfortable during a gastrografin, the tube has slipped out! Because no one should be comfortable during this type of exam.

A week after that invasive exam, I was scheduled for a tube to be placed in my belly to drain the leaking fluid- Try searching that on Google; it is not easy!

up up down down left right left right b a b a

I wish I had the cheat code to life. If I had 99 lives I would totally do everything "wrong" and see if I got different results because taking the safe route hasn't gotten me much.

I always look at the new year as a chance to start a new and forget all the bad stuff that happened the year before. When stuff goes down this early in the year, it makes it super hard to let the last year go.

The running tally of the bad stuff:
Laid off
Denied Unemployment benefits
House broken in/ TV stolen
Lost the baby
ER Visits
Hospital stays
Denied housing assistance
Car hit
*Drain pouch installed!

I really look at the lay off as the snowball that made all this happen. Is that bad? I have not forgiven them yet.

Maybe I'll go back to bed for the year. Hopefully, I'll wake up in a better place.

To be fair, I have a great family, wonderful friends, and an amazing partner for life. But what good is all that when you constantly have things to worry about and no time or energy to enjoy the company?

Happy New year!

Out and about

Yesterday I got my purple stitch removed. To celebrate, I went out with friends to hear Eli and the boys play some music. I was able to eat and sit through 3 bands! Bathroom visits:1.

I am still wearing a bandage- Doc says until it stops sticking to the dressing. I hope that is soon. I also can't wait until the swelling goes down. It has a little but some pants still don't fit right.

This whole no-colon-thing is really working out for me.

First road trip next week! :)

Ups with the downs

This weeks has been a roller coaster. I found out that, although Unemployment has been extended to 18 months, the great state of Georgia has not received the money to fulfill that bill. On the other hand, I got to say so long to my surgeon. If nothing goes wrong from here on out, we should never have to see each other again! :)

I do adore my surgeon and really admire his surgical ability but I'd much rather get on with my "normal" life. To say good-bye, I made a card in the shape of a butt that said, "Thanks! For saving my butt!" I thought is was appropriate...

I have been feeling so much better. According to Dr Nichols, I seem to be doing better than the average patient. I would say I go to the bathroom maybe 10 times a day, including twice during the night. The average patient is going more like twice as much. No more leaking or surprises. I do have some discomfort but nothing like colitis.

This week, I am gearing up for Thanksgiving! Family time and food. Who could ask for more?