A little better today…

I got some extra sleep last night. The power flickered and knocked the clock out so my alarm didn’t go off. Good for me, not so great for getting to work on time. I am still seriously fatigued though. It is really hard to explain fatigue. It is not the same as being tired or being exhausted. To me, fatigue feels like I am trying to move through concrete. After a colitis attack, like I had yesterday, I am not only fatigued but I am also in pain. My hips and pelvis hurt and my colon aches from the after effects of the spasms that grip me. There are days that living with ulcerative colitis is more than I can bear. I dig deep, really, really deep on these days.

My gastro doc’s office called and told me to get blood work done monthly now. I have to say it threw me for a loop. I have been known to completely ignore my body and end up in the hospital. I have found that the weekly blood work keeps me engaged with what is going on. Considering the last time I was on Imuran, it almost killed me and I didn’t notice. I think I will talk to my GP about getting a standing order to have it done maybe not weekly but when I feel off. I am prone to odd side effects and things just spinning out control quickly. I am pretty sure she will give me the order.

I do not do it alone. I have a lot of support from loving wife, Deb. I do not know what I do without her. She is my best friend, my biggest supporter and cheerleader and the best spouse anyone could have. She is always willing to tackle things head on and grow. Unlike a lot of couples that grow apart and do different things we manage to grow together. I am more in love with her today than I was yesterday – it just keeps getting better. Angelina makes my life easier by getting up to let the dogs out all the time and other things as well. Plus I have great friends. In fact, it was a telephone call from one of my new friends Wandering Coyote that really cheered me up tonight. Thanks WC!

It has been a really busy week for both Deb and me. We are going to take the weekend to crash and burn. We plan to get lots of sleep and eat good, healthy food and relax. I will blog though as I am still posting daily for 2011. I haven’t missed a day yet!

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Published in: on April 8, 2011 at 9:46 pm  Comments (4)  

Dispatches from the Swamp – the I don’t know and the things that make it better edition

  • Life is pretty much up in the air as far as my health right now. I don’t know if I Crohn’s disease or ulcerative colitis. Well actually I know I have ulcerative colitis the only question with that is if it is worse. I don’t think it is worse even though my symptoms are bad right now. It is because I have been off of imuran since November.
  • I am booked for a colonoscopy and a gastroscopy in about 10 days. I am not really worried about the tests it is the prep that sucks. Plus because of all the activity of the prep I will suffer for days. Not happy.
  • I don’t know what they are going to do. I do not ever want to take prednisone again. The drug makes me hot and miserable plus I cry. If they put me back on imuran it will take 4-6 months to kick in which means well, more of the same. Either way you cut it, it sucks.
  • If I have Crohn’s I don’t know what the hell they are going to do. Which is going to suck too. I am sure it will not be pretty whatever it is. Probably more of the same shit.
  • Regardless of what it is I doubt that I will be feeling better any time soon which, sucks.
  • I have a wonderful partner who I adore. She makes living with this horrible disease(s) easier. Having a partner who understands and who is sympathetic makes a huge difference.
  • I have dogs. Right now our house is a piece of canine heaven. Everyone is getting along and they are all sweet, sweet, sweet. Coming home to excited faces and wagging tails always makes me smile.
  • I have a great job. I love my job. I love the people I work with.

Pancytopenia

Pancytopenia is the official diagnosis of why I ended up in the hospital for a week. The reason I developed it is because I was taking imuran for my colitis. Imuran depresses the bone marrow. My dose was doubled 2 months ago to help cope with a colitis flare that was brewing. I am not sure if it was completely the imuran that caused the problem or if the H1N1 flu I had exacerbated the situation. I guess we will never know.

Dealing with pancytopenia has not been a walk in the park. When I was admitted into the hospital I was in critical condition. The scariest thing was my neutrophils (a form of white cells) were at .2. The normal range is 2.0-7.0. Given that these white cells are among the first to respond to any kind of infection it is a miracle that I did not come down with anything. My hemoglobin was at 81. Normal hemoglobin is between 120-150. While in the hospital, my hemoglobin plummeted to 68. At that point I was given a pint of blood. The experience of getting a blood transfusion was rather surreal. It took about 4 hours to run in because they were not sure that my IV would hold. Watching blood that was once in someone else flowing into me was a bit bizarre. If you can give blood, I urge you too. You never know when someone you know or love will need a blood transfusion.

Dealing with the low hemoglobin is quite difficult. I find it really difficult to walk any distance (think to the bathroom) without feeling like my limbs are moving through concrete. I am sleeping a minimum of 12 hours. My pallor is grey. I have very little motivation – especially to eat. However, I need to have good nutrition so that I can continue to make all the blood cells. I find that doing too many tasks in a row where I am moving around is impossible. Luckily, I have been able to sit and work this week. I even worked in the hospital.

The big question is what is going to happen with my colitis. The answer is unknown at this time. I have a new GI who has started me on a new protocol and we shall see what happens. Hopefully this break from my immune system will allow my colon to heal. I have to admit that I am simultaneously cautiously optimistic and deathly afraid.

So for now, I am not supposed to go out except to the lab when I have to wear a mask. I can’t really drive until my hemoglobin is up. But being in isolation at home is way better than the hospital!

Published in: on November 26, 2009 at 6:00 pm  Comments (3)  

When a flu is not just a flu

So, I have been down for the better part of 3 weeks with the flu. Not just your average cold but a full on plague. Having the flu is no fun for anyone but when you have autoimmune disease it becomes a whole different experience.

With any kind of virus our immune systems mount a defence. This is normal and healthy. However, if you have autoimmune disease this can make you very sick. Currently, I take a pretty whopping dose of imuran – a drug used originally for kidney transplant patients to stop rejection. Imuran is now a second-level treatment (along with some other drugs of the same type) for ulcerative colitis. Basically the imuran helps to control the immune system so it is not overactive and it stops attacking the colon. Enter a pretty serious virus and the immune system winds up and sets the whole process of autoimmune off. So, in addition to the plague, I had a pretty severe colitis flare up (urgency, mucous, diarrhea etc), 2 rashes, my asthma kicked up big time (which is also autoimmune but may have been exacerbated by the virus) and I got a fungal infection – all symptoms of a screwed up a immune system.

The good news is that the flare up has subsided. Now I will just deal with the aftermath of the pain for the next couple of weeks. Everything is starting to calm down too. The experience of the flu has actually made me contemplate a flu shot but that would just activate my immune system and then I would be sick anyway.

Published in: on April 4, 2009 at 11:26 am  Comments (4)  
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I am an idiot…

My health has been pretty good for the last several months. i have been taking immune suppresant drugs and my colitis has mostly been in remission. I still struggle with Irritable Bowel Syndrome but it is manageable. So last night when I was woken up with a familiar pain I could not understand why it was there. I have not had that kind of pain in several months. I took some emtec and was able to get back to sleep. When I got up this morning I still had the pain and I couldn’t figure out why. Then, it dawned on me, how much of an idiot I am. I ate popcorn yesterday. Not much but it was mostly the little pieces that is all brown kernels. Popcorn (like nuts) is an enemy to those of us with colitis. The little pieces irritate the hell out of the colon and cause a lot of pain. So, I am suffering today. It is a good reminder that I am not out of the woods yet. I still need to be very vigilant with what I eat or I am going to be in trouble again.

The spectre of colitis right now is very large. It was about this time last year that my health began to spiral out of control. I am so afraid that my improved health will be lost. I have worked very hard to become more healthy and get back to work. My doctor says it will take quite a while before the anxiety lessens. I take my medication religiously and it is working. I also tolerate the immune suppresants very well. In my case, if the immune suppresants stop working I am likely going to have to consider colon removal if this happens again. Having enjoyed relatively good health for the last couple of months I don’t think I would hesitate to have it removed if the colitis came bac with a vengeance.

For now though I do not have to face that decision. But I will not eat popcorn again anytime soon.

Published in: on November 14, 2008 at 7:59 pm  Comments (2)