One of the things that annoys me the most is when I can't explain what it's like to have Ulcerative Colitis or pouchitis. I have a difficult time explaining exactly what I'm feeling so it comes off minor compared to what I'm actually going through. So many times the response from other people is "So it's like a stomach bug" or "I understand. I have IBS." Well it's not like a stomach bug, and I wish it was IBS. I don't want to minimize these conditions because they are rough for the person who is suffering from them. So here's my best attempt to describe what it's like to be in a flare.
First is the pain. There are two types of pain when flaring. One is the crampy pain usually associated with diarrhea. This is the easier of the two pains. The other is a sharp pain. I have heard it best described as rubbing sandpaper on a sunburn. Or as I like to put it, raking knives throughout your insides. This pain can get very high and has stopped me in my tracks and kept me from bending in any direction.
Next is the fever. When I flare I always get a temperature. I don't know how you all feel when you have a fever, but I get body aches and chills. My back kills me and I can never get comfortable. Since my fevers always come late in the afternoon and evening, I usually have a hard time getting to sleep because of the fever. I'm a big baby when it comes to a fever, and this was always one of my worst problems when I had a flare.
Now it's time to talk about the diarrhea, everyone's favorite topic. Remember the last time you had the stomach bug or ate something that didn't agree with you and you were in the bathroom every 15 minutes. Well image how you felt then days on end, and with the diarrhea comes excruciating pain and spasms. I can remember spending forever in the bathroom huddled in a ball, sweating bullets, praying for the pain to end. I would finally feel able to leave the bathroom, but find myself needing to return just a few minutes later. Day after day after day after day.
Well we have talked about the pain, the fever, and the diarrhea. Now it's time for the biggest culprit and that's fatigue. I can't find a way to describe the fatigue. My best way is that it's like living in jello. Every movement is so difficult and takes 5 times the effort. When fatigue sets in I'm asleep by 8:00, needing to brush my teeth while sitting down (too tired to stand), and I can't walk more than 10 steps without getting out of breath. Since the fatigue comes from so many places; blood loss, lack of nutrition, dehydration, and just your body fighting itself, it's hard to help battle the fatigue. Resting doesn't even help. It just leads to more need for resting.
I could go on with more of the symptoms of the flare, but they basically all lead back to something listed above. I don't write this for anyone's pity. People with IBD are strong and able to battle the flares. I just want the person who doesn't have IBD to understand what those who do fell when in the midst of a flare.
Thursday, May 24, 2012
Sunday, May 20, 2012
Two Small Answers
I finally have some answers from my recent MRI. I'm not sure what to think about the results and I have to admit they caught me off guard. It's been one week since I've actually learned the results, and I'm still trying to process it. Mostly because I'm in a total brain fog lately and can't process anything.
Final verdict is I have two small abscesses in my abdomen near my pouch. My GI is not sure what is causing them, but believes it is a fistula that could not be seen on the MRI (they can be really tiny). After googling the symptomsof abdominal abscesses I found that I met 5 out of 6 of the symptoms. Abscesses never even crossed my mind.
I was prescribed Cipro & Flagyl, two antibiotics in the hopes that antibiotics alone will treat the abscesses. Since starting the antibiotics a week ago I have noticed some improvements. I am no longer bleeding. I don't have any more spasms. The fevers are gone. And the pain has gotten much better. I'm still not where I would like to be after a week on antibiotics. I still have diarrhea. I'm really weak and fatigued. And I'm nauseous.
I am now playing the waiting game once again as my GI is consulting with my surgeon to see what the next step is. I'm keeping my fingers crossed that a consult with the surgeon doesn't lead to another surgery. My hopeful self just says the my GI needs to consult someone who knows more about the j-pouch and not the possibility of surgery. We will wait and see!
Final verdict is I have two small abscesses in my abdomen near my pouch. My GI is not sure what is causing them, but believes it is a fistula that could not be seen on the MRI (they can be really tiny). After googling the symptomsof abdominal abscesses I found that I met 5 out of 6 of the symptoms. Abscesses never even crossed my mind.
I was prescribed Cipro & Flagyl, two antibiotics in the hopes that antibiotics alone will treat the abscesses. Since starting the antibiotics a week ago I have noticed some improvements. I am no longer bleeding. I don't have any more spasms. The fevers are gone. And the pain has gotten much better. I'm still not where I would like to be after a week on antibiotics. I still have diarrhea. I'm really weak and fatigued. And I'm nauseous.
I am now playing the waiting game once again as my GI is consulting with my surgeon to see what the next step is. I'm keeping my fingers crossed that a consult with the surgeon doesn't lead to another surgery. My hopeful self just says the my GI needs to consult someone who knows more about the j-pouch and not the possibility of surgery. We will wait and see!
Tuesday, May 8, 2012
Looking Ahead
Summer is just on the horizon and plans are being made. This is the first year in the past 10 years I am making full on plans. For the past 10 years I hesitated to make any sort of plan. Even planning to go to the pool posed it's problems.
Two years ago my husband & I planned to go to the much anticipated Pavement reunion tour. Tickets were bought months in advance. Instead of rocking at a concert, I was spending day 2 of recovery from step 1 surgery in the hospital.
Last year plans were made for a weeks vacation at the shore. I was feeling good before the trip, but after about 2 days in pouchitis reared its head. By the time I got home I was in a full blown severe flare which almost landed me back in the hospital.
These were small plans compared to this year. It all starts this weekend with my first concert since New Year's Eve. It will be followed by numerous other concerts, trips to visit my parents at their home by the shore, picnics, and ending with a concert event followed by another week's vacation at the shore. Tickets are bought, hotels are paid for so there's no turning back.
I am hesitant to get excited for the summer. With so much to look forward to I am always waiting for the other shoe to drop. It's always been summers when my IBD has flared. I'm worried this year will be no different. I'm already not feeling well. Can this year be different? I'm holding out hope, and for once will be making plans like I am not a sick person. I can't keep sitting around scared to make commitments. Living that way for 10 years is long enough. So this year I am cautiously looking forward to the summer.
Two years ago my husband & I planned to go to the much anticipated Pavement reunion tour. Tickets were bought months in advance. Instead of rocking at a concert, I was spending day 2 of recovery from step 1 surgery in the hospital.
Last year plans were made for a weeks vacation at the shore. I was feeling good before the trip, but after about 2 days in pouchitis reared its head. By the time I got home I was in a full blown severe flare which almost landed me back in the hospital.
These were small plans compared to this year. It all starts this weekend with my first concert since New Year's Eve. It will be followed by numerous other concerts, trips to visit my parents at their home by the shore, picnics, and ending with a concert event followed by another week's vacation at the shore. Tickets are bought, hotels are paid for so there's no turning back.
I am hesitant to get excited for the summer. With so much to look forward to I am always waiting for the other shoe to drop. It's always been summers when my IBD has flared. I'm worried this year will be no different. I'm already not feeling well. Can this year be different? I'm holding out hope, and for once will be making plans like I am not a sick person. I can't keep sitting around scared to make commitments. Living that way for 10 years is long enough. So this year I am cautiously looking forward to the summer.
Tuesday, May 1, 2012
Real Estate w/ Chronic Disease
I am taking this from my recent real estate blog. To find it in it's original form see here: Karen Nagy's Blog.
The real estate business can be hard enough in today's market. Working in real estate while managing a chronic disease is even trickier, but it is possible. My chronic disease is ulcerative colitis, and I have had it my entire real estate career. I have learned some tricks that help me be successful while keeping both my clients and my body happy.
First is to know your limitations. I can only do short showing tours. After about 3 houses I am done. There are also certain times of the day for me that are more difficult than others. I try not to schedule any appointments during these times, instead I focus on mailings, social media updates, and phone contacts. I usually give my clients a few different appointment times to pick from, and they generally do not have a problem with this method.
I also need to be selective of my clients, a good practice for any real estate agent. I do not have the energy to take every person that calls my phone on appointments. Instead during my initial conversation I will ask more probing questions to find their motivation. If they are not willing to answer my questions, then they are not worth my time. I find the more motivated a person is to buy, sell, or rent real estate, the more willing they are to give up front information to you.
Lastly is a back up plan. There will be the inevitable day that I am too ill to leave the house or, in my worst cases, in the hospital. I have found a couple of agents who are willing to sub for me in a pinch. Of course this usually means some form of compenstation to the other agent if an agreement is made, but my client's happiness is my goal. If you do not feel comfortable speaking with other agents about your illness, go to your Broker. The Broker should be able to help you come up with a back up plan that works for everyone.
While working with a chronic disease does provide its extra challanges, it does not mean you cannot be successful.
The real estate business can be hard enough in today's market. Working in real estate while managing a chronic disease is even trickier, but it is possible. My chronic disease is ulcerative colitis, and I have had it my entire real estate career. I have learned some tricks that help me be successful while keeping both my clients and my body happy.
First is to know your limitations. I can only do short showing tours. After about 3 houses I am done. There are also certain times of the day for me that are more difficult than others. I try not to schedule any appointments during these times, instead I focus on mailings, social media updates, and phone contacts. I usually give my clients a few different appointment times to pick from, and they generally do not have a problem with this method.
I also need to be selective of my clients, a good practice for any real estate agent. I do not have the energy to take every person that calls my phone on appointments. Instead during my initial conversation I will ask more probing questions to find their motivation. If they are not willing to answer my questions, then they are not worth my time. I find the more motivated a person is to buy, sell, or rent real estate, the more willing they are to give up front information to you.
Lastly is a back up plan. There will be the inevitable day that I am too ill to leave the house or, in my worst cases, in the hospital. I have found a couple of agents who are willing to sub for me in a pinch. Of course this usually means some form of compenstation to the other agent if an agreement is made, but my client's happiness is my goal. If you do not feel comfortable speaking with other agents about your illness, go to your Broker. The Broker should be able to help you come up with a back up plan that works for everyone.
While working with a chronic disease does provide its extra challanges, it does not mean you cannot be successful.
Sunday, April 22, 2012
My Cat, Pollard
I know everyone says it but I truly do have the best cat in the world. Pollard came to us shortly after my husband and I bought our house. I picked him after just being dropped off at a local pet store because he was inquisitive, but not too rowdy or cranky. My husband named him Pollard after the great Bob Pollard of Guided by Voices. He has surely lived up to his name by offering big kicks and a howling cry.
After only having him two weeks Pollard became very ill on a Friday while we were both at work. When my husband came home Pollard had thrown up three times and couldn't lift his head. Soon we were off to the emergency vet where they gave him some fluids. They couldn't keep overnight because at 9 weeks he didn't have all his shots yet. Pollard came home still weak, but feeling a bit better. I stayed up with him that first night feeding him some molasses on his nose for calories. After a couple of days, poor Pollard broke out in a rash all over his body and the little pads on his feet were so red he couldn't walk. Turns out the little guy was allergic to Penicillin.
Pollard has given us other problems too. He's a big, neutered, male so he gets urinary & bladder infections. On top of that he gets constipated too. His most favorite thing to do when he's not feeling well is to stop eating. If you know about cats, you know it doesn't take long for cats to go into kidney failure without food. We've gone through home cooked chicken, baby food, and even peanut butter to get him to eat. He's had subcutaneous fluids, x-rays, & ultra-sounds. Pollard and I were meant for each other.
Because of all he has gone through, he is great for me when I'm not feeling well. On nights I can't sleep he comes to curl up next to me. If I'm having a particularly rough day, he gives me lots of rubs hoping it will help me feel better. He's the first to greet me everyday when I come home from work, and cries every day when I leave. We should have named him shadow because he's always under my foot. Pollard is my best friend.
So on April 25th, we will celebrate Pollard's 7th birthday. While 10 times bigger than he was on the day we brought him home, he is still my little kitten. I work with many cats in volunteering at a cat shelter and he is still the best cat I've ever come across. Pollard with get lots of presents, treats, and a wet food "cake", but he still won't realize how special he is to me.
After only having him two weeks Pollard became very ill on a Friday while we were both at work. When my husband came home Pollard had thrown up three times and couldn't lift his head. Soon we were off to the emergency vet where they gave him some fluids. They couldn't keep overnight because at 9 weeks he didn't have all his shots yet. Pollard came home still weak, but feeling a bit better. I stayed up with him that first night feeding him some molasses on his nose for calories. After a couple of days, poor Pollard broke out in a rash all over his body and the little pads on his feet were so red he couldn't walk. Turns out the little guy was allergic to Penicillin.
Pollard has given us other problems too. He's a big, neutered, male so he gets urinary & bladder infections. On top of that he gets constipated too. His most favorite thing to do when he's not feeling well is to stop eating. If you know about cats, you know it doesn't take long for cats to go into kidney failure without food. We've gone through home cooked chicken, baby food, and even peanut butter to get him to eat. He's had subcutaneous fluids, x-rays, & ultra-sounds. Pollard and I were meant for each other.
Because of all he has gone through, he is great for me when I'm not feeling well. On nights I can't sleep he comes to curl up next to me. If I'm having a particularly rough day, he gives me lots of rubs hoping it will help me feel better. He's the first to greet me everyday when I come home from work, and cries every day when I leave. We should have named him shadow because he's always under my foot. Pollard is my best friend.
So on April 25th, we will celebrate Pollard's 7th birthday. While 10 times bigger than he was on the day we brought him home, he is still my little kitten. I work with many cats in volunteering at a cat shelter and he is still the best cat I've ever come across. Pollard with get lots of presents, treats, and a wet food "cake", but he still won't realize how special he is to me.
Happy Birthday Mr. P!
Wednesday, April 11, 2012
Another Setback
Seems to be I've had a little (or big) setback in my recovery. Over the past couple of weeks I've been feeling more tired and have been expiriencing some more pain in my butt. Ha! A pain in my butt that didn't have to do with work or my kitty cat. The spasms, imagine a charlie horse in your butthole, were getting stronger and becoming more frequent. Was I having a baby out of my rear? Ever being the optomist I figured it was probably just something I ate that didn't agree with me and not something serious.
In this time I had also been experiencing more frequent discharge from my girlie parts. This happened before after the Bartholian abscess was drained. I assumed stopping the antibiotics led to a little more discharge, but my body would soon adjust. Now it's just getting worse.
Over the holiday weekend I began noticing some more unusual and frightening symptoms. The discharge began to have flecks of poop in it. I hoped to dismiss it as some leakage that worked its way forward, and I'm still hoping that's the case. I also noticed when I had to fart out my butt it came out my girlie parts instead. What?! If it wasn't so disturbing, it would be a pretty cool magic trick. I also began to run a low-grade fever at night along with tons of pain in the region. I feel like I'm carrying a bowling bowl in my pouch and the pressure is crazy. I have a multitude of fissures (little papercut like tears on my butt) that KILL when I use the potty.
So needless to say I'm not feeling my best and I placed the long awaited call into my GI doctor. She thinks it's a recto-vaginal fistula or a little opening going from my butt to my girlie parts. Sometime in the next week I will be scheduled for a MRI to see if this is in fact what is causing my problems. In the mean time I was given a nice little muscle relaxer to help with the spasms. It seems to be taking the edge off. So I will be waiting anxiously for when the MRI is scheduled. If in fact it is an RV fistula, most likely my diagnosis will be changed to Crohn's. Not exactly big news, but it could change my treatment plan and actually offer more drugs covered by insurance. Good news maybe?
On the upside, the Entocort seems to be helping with the pouchitis. I am happy to report the one thing that is not bothering me at the moment is the pouch.
In this time I had also been experiencing more frequent discharge from my girlie parts. This happened before after the Bartholian abscess was drained. I assumed stopping the antibiotics led to a little more discharge, but my body would soon adjust. Now it's just getting worse.
Over the holiday weekend I began noticing some more unusual and frightening symptoms. The discharge began to have flecks of poop in it. I hoped to dismiss it as some leakage that worked its way forward, and I'm still hoping that's the case. I also noticed when I had to fart out my butt it came out my girlie parts instead. What?! If it wasn't so disturbing, it would be a pretty cool magic trick. I also began to run a low-grade fever at night along with tons of pain in the region. I feel like I'm carrying a bowling bowl in my pouch and the pressure is crazy. I have a multitude of fissures (little papercut like tears on my butt) that KILL when I use the potty.
So needless to say I'm not feeling my best and I placed the long awaited call into my GI doctor. She thinks it's a recto-vaginal fistula or a little opening going from my butt to my girlie parts. Sometime in the next week I will be scheduled for a MRI to see if this is in fact what is causing my problems. In the mean time I was given a nice little muscle relaxer to help with the spasms. It seems to be taking the edge off. So I will be waiting anxiously for when the MRI is scheduled. If in fact it is an RV fistula, most likely my diagnosis will be changed to Crohn's. Not exactly big news, but it could change my treatment plan and actually offer more drugs covered by insurance. Good news maybe?
On the upside, the Entocort seems to be helping with the pouchitis. I am happy to report the one thing that is not bothering me at the moment is the pouch.
Wednesday, April 4, 2012
Admitting I'm Sick
I sit here debating whether or not I should make a phone call to my GI. I know I should. My symptoms have been getting progressively worse. I know they will not improve on their own. Every day I wake up and go through the day with the same symptoms; spasms that bring me to a sudden stop, severe urgency, fissures, and leakage. I think if I just make it through this one more day, then all is fine.
See the problem with calling the doctor is that I then admit I'm sick. I hate being the sick one. I've played out that role. It's time to move on with my life, but I'm not quite able to yet. If only calling the doctor meant I had an appointment, got some medicine, then got better. This isn't the case though. Calling the doctor with me has lead to too many procedures, blood work, and hospital stays. I don't want to go through all of this again.
So I sit trying to debate whether or not I am sick. Whether or not to call the GI. I will give in eventually I'm sure, but it probably won't be tomorrow or the next day.
Subscribe to:
Posts (Atom)