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 J-pouch. Show all posts
Showing posts with label J-pouch. 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?
Thursday, November 4, 2010
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.
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.
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)
Thursday, March 11, 2010
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..."
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..."
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!
Thursday, February 18, 2010
Comes and goes
I had a rough night. Sweats, rolling on the bag at night, soooo many trips to the bathroom... Today, I'm down. I don't get a lot of sleep last night these days, even when I want to. I can't wait to get this thing off me and get some rest!
It is so hard to stay motivated just to do daily things. I don't have a demanding life but it takes so much energy to just do the dishes, or take the car in, or get out of bed.
It is so hard to stay motivated just to do daily things. I don't have a demanding life but it takes so much energy to just do the dishes, or take the car in, or get out of bed.
Tuesday, February 16, 2010
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.
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.
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!
Thursday, December 10, 2009
...
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!
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!
Thursday, December 3, 2009
Stress and Strain
During the holidays, I assume most people encounter more than the usual stress. Unfortunately, if you add a chronic illness to the mix, it doesn't get easier.
I have read pamphlets about "Taking Care of the Care-Taker" but there is still some difficulty understanding each other at times. I understand that he has to deal with real life (work, bills, hobbies) and when he gets home, he has to deal with a sick wife. That is a lot to take on. Any illness is a lot to take on for all those involved.
But no matter how strong people think the "sick one" is, life almost stops for them. And that can be just as unnerving. Imagine losing the most elementary of functions. Of course the last thing you want to do is create more work for those around you. So often, I feel, we take on more than we can handle. I guess if the care-taker does the same, you both end up stressing yourself out and disconnecting from the other.
I pride myself on my ability to empathize. But once in a while, I think I need to check in on myself.
I have read pamphlets about "Taking Care of the Care-Taker" but there is still some difficulty understanding each other at times. I understand that he has to deal with real life (work, bills, hobbies) and when he gets home, he has to deal with a sick wife. That is a lot to take on. Any illness is a lot to take on for all those involved.
But no matter how strong people think the "sick one" is, life almost stops for them. And that can be just as unnerving. Imagine losing the most elementary of functions. Of course the last thing you want to do is create more work for those around you. So often, I feel, we take on more than we can handle. I guess if the care-taker does the same, you both end up stressing yourself out and disconnecting from the other.
I pride myself on my ability to empathize. But once in a while, I think I need to check in on myself.
Road trip with my new innards!
The trip to Ohio went well. It usually takes 8 hours but with a couple extra bathroom visits it took us about 9 hours to get there.
Not too much discomfort. Of course the hardest part was not over eating during the holiday. I think I did pretty well. There are always temptations but I at least have the luxury of rest. Whenever I feel overwhelmed or just couldn't sit up straight any longer, I just went to the back room and slept. I guess people don't expect much from you after surgery.
The highlight: Eli's grandfather lives across the street from an Amish family and my soon-to-be-sister-in-law looooves animals so of course she asked to ride a horse. I was second to mount up! I can't believe I got up there. This was a big beast. I made them promise to hold the reins during my ride but how much fun!
I guess I am getting back in the saddle!
This week I have also noticed a significant decrease in swelling. I am also down to a normal bandage instead of the gauze dressing. Slowly but surely!!
I can't wait for Christmas!
Not too much discomfort. Of course the hardest part was not over eating during the holiday. I think I did pretty well. There are always temptations but I at least have the luxury of rest. Whenever I feel overwhelmed or just couldn't sit up straight any longer, I just went to the back room and slept. I guess people don't expect much from you after surgery.
The highlight: Eli's grandfather lives across the street from an Amish family and my soon-to-be-sister-in-law looooves animals so of course she asked to ride a horse. I was second to mount up! I can't believe I got up there. This was a big beast. I made them promise to hold the reins during my ride but how much fun!
I guess I am getting back in the saddle!
This week I have also noticed a significant decrease in swelling. I am also down to a normal bandage instead of the gauze dressing. Slowly but surely!!
I can't wait for Christmas!
Friday, November 20, 2009
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! :)
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?
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?
Wednesday, November 11, 2009
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.
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.
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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