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.
Showing posts with label colitis. Show all posts
Showing posts with label colitis. Show all posts
Wednesday, October 4, 2017
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.
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.
Friday, March 23, 2012
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
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
Thursday, April 21, 2011
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?
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?
Tuesday, March 16, 2010
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)
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)
Monday, February 22, 2010
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.
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!
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!
Sunday, January 24, 2010
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 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!
Monday, January 4, 2010
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!
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!
Wednesday, October 28, 2009
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?
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?
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