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.

Summer Sabbatical

We have recently come to the understanding that work is killing me. Not literally, but very much so figuratively. I've lost the excitement for life and I want it back. As with anything, Eli and I made a plan to fix it.

Step One: Take back my health-I've heard of friends having fertility issues for months and then getting pregnant after going Paleo. One friend was losing weight to get pregnant and on her way to fertility treatments found out she was pregnant. Of course, our mutual friend went Paleo after that and got pregnant on her first IVF cycle! I'm in. I gave up refined sugar and carbs such as bread, rice, grains, beans, corn and white potatoes. It wasn't easy at first, but now I'm getting the hang of it.

We aren't trying to stress me out with this diet, so if I mess up or "cheat," we roll with it as long as it is once in awhile. I can't remember when I felt better. Joint pain is gone; I'm able to walk a lot more and do gentle exercises (walk the dog or light yoga). Our food is fresh and the kitchen sink is full of dirty dishes every night. I love cooking; I love eating; it was a no brainer.

Step Two: Quit my job- I knew the news wouldn't be taken lightly but I had to get out, by any means necessary. I was over worked, totally stressed and not happy. Now that I'm treating myself better, I need to be treated better. I broke the news to the boss and we were able to strike a deal. Part time, reduced responsibility, and work mostly from home for a pretty good portion of my regular salary. I'll take it!

Step Three: Summer Sabbatical! We want to get away. We are packing up the old Honda Fit (lovingly referred to as Fitty) and going out west! We'll have about ten days of just me and the hubs and the open road. We'll stop along the way, visit friends, camp, hike, eat, sleep, and of course poop (I can't help it, I don't have a colon!). Thus, our Dirtbag Summer.

Dirtbag trip 2015 over the Grand Canyon

We are bumping up our Dirtbaggedness this year. Last year we booked hotels/B&Bs and flew to Vegas to start the trip. This year, we are driving from Atlanta to Colorado. Living out of the car for so long (as the old folks we have become) requires a little more creature comforts than we used to pack. We are outfitting Fitty to be an amazing little camper! All DYI! We hope you follow our journey into the gorgeous sunset of our Dirtbag Summer!

Building begins here!

Never stops

Eli used to joke that my full time job is my health- Not so funny now!

Friday, as we were heading out of town to get away from ourselves, we got a call from the APD (Atlanta Police Department), asking for more information about my assault. They asked for the attacker's birthday with exact year, address and I'm sure other things I can't think of now. All stuff I gave to the investigator on Monday. "Who did you speak with? We don't have anyone here by that name. Were you at zone 3?" I was at zone 5- where they told me to go last week. Where they took my written statement and got all her corrected information. "Did you call zone 5?"

She actually said, "I don't have any reason to call zone 5." She, the investigator, wanted me to call my work to get the above information and call her back. I called zone 5 to send her the information.

The weekend was a much needed getaway with my in-laws. Eli ran a race and came in first for his age group, that is slowly climbing... so is mine. Great for his race times; not so great for one who sits around all day investigating her own assault...

We took our 85 pound, five year old puppy to the beach to let her run. She was so excited and happy. Each time running to the water and back to me, almost to check in with me. On the beach, alone, I felt safe and sound. Free of fear and anxiety.

As we left, of course, we started to talk about our next move. The thought of going into the office that has supported this woman, for probably close to 20 years, tightens my shoulders and sends a pain through my gut. I ball up in the passenger seat, the seat she sat in when she reached for my throat. Then the thought of other participants- people who have yelled at me before, people who have records, people I used to want to help have now become masses of furry concealed until I unleash it. She is still receiving services while I am locked in my home, waiting for a warrant to be served.

I ran errands today and was feeling good. I have only taken my klonopin when I can feel a panic attack coming on and have even started splitting the pills in half. And then the phone rings. It's not the police, or the worker's compensation firm, or my office. It was my nurse for my gynecology/oncologist. My appointment is tomorrow but this was not a routine phone call to verify my appointment. She said, "I know you are coming here tomorrow but I wanted to know if you want to go ahead and schedule the surgery?"

The surgery?! I don't even know what the diagnosis is. I don't even know what "the surgery" is! This is not what you want to hear when you are on Prozac and klonopin to "just get by"!

24 hours from the phone call, I will find out what she is talking about. I'm hoping for the best... surgery?... is there such a thing?

The aftermath

Today was my day to get things "in order". I met a new therapist who seems to understand that things were bad before the attack and now things are just a horrible!

Next, Zone 5 precinct to press charges. The investigator seemed helpful and concerned for the most part but was a but surprised when I mentioned the doctor put me on major anti-anxiety medication and I have not returned to work. Hummm...

Then, the phone calls. HR rep called- I need to talk to an adjuster to get my medical costs paid; I can't just see who I want, I need to go where they send me; Unless I've already seen one, in which case I need to give my statement to the adjuster and they may need to contact the doctor... Worker's Comp lawyer- We need to set up an appointment to get the story down and see if we have a case; and next week won't work for him, how 'bout Wednesday? Afternoon? Fine. (I feel like he's a lawyer...)

By 3pm I was ready to be alone and not talk about it. I sent Ophie to the neighbors' and turned on my appletv to catch up on reruns. I tried, at the urging of my doctors, to delay dosing until I can get a feel for how I am doing each day. If I can get through the morning without a crying spell, I'm good. By lunch, even better. Unfortunately, about 3 pm was the tipping point.

Depression began to set in. It quickly turned to panic; sporadic breathing and uncontrollable shaking. The medication is pretty fast acting but it took about 20 minutes for me to calm down.

I called for reinforcements. Emily and Casey came over to snuggle. Casey has turned into a gentle, caring little lady who could make anyone smile. She gently rubbed my back just like my dad used to when I'd stay home from school. She showed me pictures of her trip to Six Flags and was so funny. The medication began to do it's job.

Tomorrow is another day. No plans. Just working on me.

I wonder if my participant will be in the office for her bi-weekly meeting.

Cut the CRAP! TP evaluation installment 1:Cottonelle Aloe and Vitamin E

When you have your colon removed, everyone, if they know or not, will tell you that you'll have to get used to the frequent bathroom visits. What they don't tell you is the enormous influx of the use of toilet paper; and with that, of course, the changing of the rolls!!

It seems like every time I go to the bathroom, I have to change the roll. Sharing my bathroom with a man who, lets be honest, "wipes" at school or at work more than he does at home, chances are good, I'll need to change the roll more than he does. I'm sure most sitter/stander couples go through the same thing. But do you go through it every day and a half? That's how quickly we go through a roll. And I'm talking a double roll of Kleenex Cottonelle.

Now, bottom line, my bottom line deserves the best after what we've been through. Not to mention the wet, irritated... situation down there that comes with the "new body". I deserve the best... I just haven't found it yet!

I have been using not only Cottonelle double roll, but Cottonelle Double roll with Aloe and Vitamin E! I thought it would soothe my toosh. I was wrong!

Evaluation: I need something to stand up to wetness, creams, ointments, fronts and backs, and can do it with less irritation and less squares! After weeks of using this brand, I found that this puppy doesn't stand up to my... puppy! Although it is soft, Fido falls apart when fetched to wipe up my business. I didn't notice any soothing going on with or without the added Aloe and E. :( In Kleenex's defence, I do like the wet wipes!

Back to the drawing board. Maybe I'll try the bears?

Another chance

I need just one more chance at a baby.

We have been trying for a couple months now. My PCP, who met me once, suggested we wait nine months; my OB who knows me from last year is very excited that we are trying again. Last year was devastating. I hope I never lose another baby.

Every month, we get our hopes up. I stop with the coffee and... that's my only "vice" really- if you can call it that! I tell more and more people that we are "trying". I come up with new reasons why this month would be better than last month to get pregnant. I research the due date to see who's birthday the baby would be born around. I become that crazy lady that talks about the cluster of cells in her belly she can't feel but "knows" is there...

Every time I get my period, I feel like I did last year. I feel like we are never going to be parents. All my friends who have been through this tell me that it gets better; that it will happen one day. What if it doesn't?

Paid in full!!

Our benefit show went really well. So many people came out; a lot of people who have made a difference in my recovery! I have been so lucky to have so many people who love and care for me in my life.

Most bands covered a Beatles song for me and I even got a No Doubt and a Fernandina mix-in! I sold a lot of my crafts and the shirts were a hit! It was a GREAT night- and a great morning after counting our funds!

The next week I called the hospital to see if they would discount my bill if I paid a large sum- AND THEY DID!!! We were able to pay it off in full!!!

Thank you to everyone who helped out- financially and emotionally!!
XOXOXO

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.

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!

...

I haven't written for a while. I wish I had an excuse. I don't really have anything going on except, what I call, "still healing".

I recognized that I am more embarrassed with my condition now that everything is tucked away and I look "normal". I can't point to something and say, "see- that is what is going on!" Since the beginning of this ordeal, I have said, "This will get me back to normal; the way I was before colitis." Now, I'm afraid, it won't.

I am still going to the bathroom pretty regularly; Maybe 10-15 times a day. I still have accidents while I sleep but usually only once every two weeks or so. I am going to the bathroom 2-4 times every night. It is really hard to have a good, uninterrupted, night's sleep.

I'm dizzy, in pain, tired, and, still, somewhat depressed. Eli and I have fortunately worked out issues that have come up. Our communication has gotten even better and we are able to laugh again. It truly is the best medicine.

... Got to go!

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?

Expect the unexpected

Things were going pretty well. I got all my tests run and registration completed. Unfortunately, there is always something.

CT scan showed a pelvic abscess... whatever that is. The doctors explained that it could be something- it could be nothing. Is that supposed to comfort someone? And because the surgery is so soon, we had to hear from the surgeon if it would interfere with the take-down surgery.

We decided to continue as planned with the surgery while the surgeon reviews the film. He couldn't tell where the abscess was so the day of surgery, my doctor hijacks my stretcher and hauls ass down the hall to the hospital CT facility. I guess it is an unusual sight to see a doctor wheeling a patient around. Everyone we passed in the hall ask, "You need help? You got that?" We had a deadline...

The first CT scan was administered from the mouth and with an ileostomy, that's where it ends. It can't go any further. Well, this time it was going from the bottom up... not fun. I always told people that the stoma is a kinked hose so the bottom part of it leads to my bottom. Honestly, I was never really sure but it made sense. I can tell you now! When they injected that fluid in my bum, my bag filled up FAST. I don't think she believed me when I said, "I can't hold it. Stop!" But when she saw my bag, she knew we were overflowing.

The film was read and I was off to surgery.

Chronic full time job

Yesterday I was working on surgery stuff from 10:30am to 3 pm. I had my pre-op appointment with Dr Nichols; then had to register with the hospital; then had to get blood work done; then had to pick up my barium for my CT today.

Today, I had to WAKE UP EARLY- just to eat because I can't eat four hours before my CT. I have to start drinking my Barium at noon, finish it at 1pm and then head up to the Kaiser that has a radiology facility... Later today I have to call the hospital back to register over the phone because they were too busy yesterday.

With a disease like this, who needs a job?