Today is one of ‘those’ days where I feel like unmitigated crap. I shall be back tomorrow though with some great post. This post has been brought to by ulcerative colitis and other autoimmune diseases.
It is no secret that I hate summer. I can’t stand the heat and it makes me sicker than I already am. There is something that happens to those of us with autoimmune diseases that does not allow us to tolerate the heat. I can overheat in about 5 minutes. Other times, the heat makes me nauseous.
Here at the Swamp we have multiple air conditioners so, for the most part, suffering is optional. Most years, by the middle of July we are running all the air conditioners just trying to keep somewhat cool. In our bedroom we have an air conditioner, a ceiling fan and a turbo fan all going to keep us cool while we sleep. I use earplugs at night but Deb assures me that it sounds like a wind tunnel once my CPAP machine is added to the mix.
This summer, so far, has been a treat for me. We have only had 1 or 2 days that went above 25 degrees. It has been mostly overcast and rainy. It looks like it will continue for the next several days. Summer is something I have to endure, so the longer we go without the baking heat the closer to Autumn we get!
I have been living with ulcerative colitis* since June 2005. In that time, I have been hospitalized twice, had 2 blood transfusions, had a barium enema**, had 3 colonoscopies, had a gastroscopy, had too many IVs to count, and had blood tests in the hundreds. I have taken more medication for colitis and its associated secondary illnesses than I ever thought one human being could take. I have lived in chronic pain for most of the last 5 years.
Ulcerative colitis is an inflammatory bowel disease. It is confined to the colon where it causes ulcers that can bleed. Severe pain, cramping, diarrhea and blood loss are some of the common symptoms of ulcerative colitis. There are also symptoms that occur outside of the colon. These symptoms can include joint pain, eczema, eye problems, thrush, canker sores, yeast infections and other fungus, and skin eruptions (like boils). In reviewing the list of symptoms outside the colon, I have had most of them at various times.
For the most part, I persevere through all of this. I have developed an anxiety disorder living in pain and the stress of constantly locating bathrooms. I never know what the day will hold for my colon. In the early years, I would make 20+ trips to the bathroom. It was exhausting.
Fatigue is perhaps the worst part of this disease for me. I am so tired all the time. It is a different kind of exhaustion on a level I have never felt in my life until ulcerative colitis. I need to sleep 12 hours per night to function at all.
I cope ok. I am stubborn and I refuse to give in. However, there are days when I just lose it. Today was one of those days. My hemoglobin is low due to bleeding and Imuran.*** I am tired. I have had a difficult week. I have passed a lot of mucous and blood this week. Plus I have a very painful boil on my leg and canker sores in my mouth. It seems that the more symptoms I have, the less well I handle it. Add stress from life and I want a nice quiet place where I can cry. Today was one of those days. I don’t have a lot of those days. I probably have a right to have more of these days than I do.
**The barium enema, was hands down, the worst test I have ever had. It as humiliating, painful and did I mention humiliating? Plus you don’t get that wonderful conscious sedation so that at least you can forget about it the next day.
**Imuran is an immune suppressant medication that I take for ulcerative colitis. I also take mezavant and pariet.
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.
Ok, I confess, I hate summer. Actually, I more than hate it, I loathe it and I dread it. Yet every year it comes. This summer has not been as bad as summers past but it is still bad enough. We are now on day 3 of a heatwave that has seen the temperatures in the valley close to 35 degrees celcius. This is insane. I take a shower, come downstairs, clean up after the dogs, let a few out and I am sweating. It is insanity. Having auto-immune disease makes one even more susceptible to the heat.
It also makes me incredibly bitchy. I have no fucking patience for anything – not for the dog panting on my already hot leg, or the one who wants to be velcroed to me. Simple errands become an excercise in entering hell and becoming overheated. And it never fails that when there is a heatwave I will have some major running around to do. So far, during this heatwave, my computer had to go into the shop, my laptop died and I had to get another one, I picked up my computer and they did not do what I wanted so it had to go back again today and picked up again today. Then there is all the setting up and finding of software because they had to do a clean install of windows. Oh and the sound wouldn’t work and I couldn’t make it work with sweat dripping in my eyes.
Even the poor dogs can’t get cool despite three air conditioners running. I feel the most sorry for Kiefer because he is big, hairy and black. Molly the little pom who is also quite hairy suffers too. They are all panting big time and sucking back the water. Most of them don’t really want to eat either. The only one who does not seem at all bothered by the heat is Clio who is currently making bizarre noises and digging her bed. Oh the joys of the blind and brain injured little dog!
Thankfully I am done for today. I just looked at the weather eye and the temp is 30 but it feels like 37. Just tell me it will end. Thank god the ice machine is working!
Since December 19, 2007 prednisone has been a steady medication in my life. I was started on it for the pyoderma gangrenosum I developed in November of 2007 when it was finally diagnosed correctly. Now you might be wondering why I am so happy to be off of prednisone. Well, the main reason is the sheer number of side effects which can be seen here and here.
Luckily I did not suffer all of the side effects. For some reason I do not seem to get the increased appetite side effect. I am not sure why but I have heard some people say they were so hungry on prednisone that they would eat Styrofoam. That is some serious hunger!!! I also did not gain weight on prednisone. I am not sure if the weight gain side effect comes because people are eating more or if it is just a side effect. I did get to enjoy some of prednisone’s other side effects. It affected my mood incredibly. I was depressed and anxious on it – especially at the highest dose of 80 mg per day. I have definately been slow to heal. I still have patches of shingles that are not healed – including the infected patch on my back. I have also had increased fatigue and weak muscles. There are other side effects I have had to deal with but I don’t want to bore everyone!
The other good thing about getting off the prednisone is that I get to go off of 2 other medications I was on to deal with the side effects. To deal with the emotional/mental side effects I have had to take clonazepam. I did have to wean off of this drug as the withdrawal looked a little scary. I can also stop taking pariet which I needed to deal with the stomach upset caused by prednisone.
Finally, to be off prednisone marks a huge victory in my battle with ulcerative colitis. The fact that I am off of it with no return of symptoms means that I am finally in remission. While the prednisone certainly helped get the symptoms under control it alone does not put colitis in remission. It is likely due to the imuran I have been taking since the beginning of January. As an immuno-suppressant, imuran works to depress the immune system so that it is no longer attacking my colon. Imuran is a drug given to transplant patients to stop them from rejecting the new organ. There are some serious side effects (including the risk of cancer – rare but it is there) however, given the choice between ulcerative colitis, losing my colon and taking imuran – I chose imuran. I am so looking forward to my health continuing to improve. For the first time in 3 years I am free of ulcerative colitis symptoms.
As many of you know I have been dealing with major health issues since the end of November. It all started with loveley Dr. M…who took me off asacol and set this chain of events into motion. You see he decided that because of one symptom I had that I did not have colitis that I had irritable bowel syndrome. Apparently one can have both but he was positive that I had IBS rather than ulcerative colitis (UC). He was so sure he was the most condescending bastard doctor I have ever dealt with. I told him that I had seen 5 doctors and no one had ever suggested IBS that everyone said I had colitis. He scheduled the colonoscopy anyway. I also told him about difficulty I had taking asacol and that I was unable to take the full dose as it made me very sick. He told me I just needed to to go off of it and eat more fibre. Well, for someone with UC eating more fibre is a recipe for disaster. But I believed him and I followed his instructions.
On November 23, 2007 I had the colonoscopy and he says “oh, you have colitis” I said, sarcastically, “really??” I never would have guessed. So he hands me a prescription for double the amount of asacol I had been taking. I told him I could not take that amount. He said well eat more fibre and play around with the dose. I asked him about immunosuppressants as I had not gotten anywhere with my colitis for 2 years and he laughed and told me I would never get those drugs because they cause cancer. I asked when I would see him again and he said never, my gp could handle it. I was almost in tears. This colonoscopy and doctor were supposed to fix my problem and instead he left me feeling completely dismissed and helpless.
A couple of days later I developed what I thought was a boil under my right eye. So, off I go to the doctor who prescribes keflex. The week goes on, my eye gets worse so that I can barely close it. I go back to her on Friday and she sends me to the hospital to have it lanced and to get IV antibiotics. Well, let me tell you that was no fun. I am not sure what hurt more the needle to numb it or when she cut it open. Anyway, they immediately cultured the stuff that came out and started me on IV antibiotics. At first I only had to go once a day. Then I developed a lesion on my stomach and they changed the antibiotic and I had to go twice a day. Now, I have crappy veins and it takes a long time to get an IV in me. We did this for 10 days. I was not amused. Finally, when they could not get any more veins they let me take them orally and sent me to the home care nurses who realized that we were not dealing with an infection but with pyoderma gangrenosum. It is a wonder no one else figured it out because they kept culturing all my lesions and nothing grew. I kept asking what this meant and all they would say was that it was not helpful. I am so grateful to those nurses!! I went to see a dertmatologist and he put me on prednisone to try and calm it down. I still had to have daily dressing changes for about 2 months and could not shower for the longest time.
My colitis continued to act up all through december and january. By the end of january I was close to hemorrhaging. I had lost a lot of blood and could barely stay awake. Off to the hospital we went where I spent 12 days on huge doses of prednisone and morphine. Apparently so much morphine that I was hallucinating but I don’t really remember much about it. I spent the next couple of months weaning down from 290 mg of morphine twice a day and 80 mg of prednisone. I off the morphine but still have 5 weeks of prednisone to go.
So, just when things are starting to get better. I am out walking 3-4 times a week I get shingles. I had this weird pain in my back which I thought was just a knot and could not wait to see my massage therapist to get it worked out. It had been bothering me for about 6 weeks and was very sore. Then I get this rash. Deb says: “you have shingles“. I say no, couldn’t be. Saturday morning i checked the mayo clinic website and sure enough i have shingles. Off to the walk in clinic where I am told yes, you have shingles and how long have you had the rash and why did you not get this looked at 3 days ago. Sigh. Can’t win. So now I am on anti-virals, atarax for the itching, gabapentin for the nerve pain and amitrityline for the severe pain at night. Oh and morphine to take the edge off because I have it here.
So, not wanting to invite trouble but what could happen next?? At least I know now I don’t have breast cancer because the pain I was feeling in that area was the shingles. My ashtma is not acting up it was just hard to breath because I had a band of shingles around my lungs. So feel free to guess in the comments what could possible plague Chris next!!
Well, it has been a while. As many of you know I have been quite ill with a colitis attack from hell that landed me in the hospital for 12 days. Well, it would appear that was only the beginning. I have spent the last two months weaning myself off the various drugs they started me on in the hospital to try and get this under control. I have been making good progress. I am down from an all time high of 290 mg of slow acting morphine twice a day to 30 mg twice a day and the prednisone is down from 80 mg to 20. It has been very slow going. I am now at the point where I am able to get out and get some exercise and try to rebuild some strength after basically spending 2 months sleeping. The good news is that all colitis symptoms seem to be gone. I am sure this is a result of the imuran (which is an immuno-suppressant). It is thought that colitis is an auto-immune disease whereby the immune system attacks some part of the body (in this case the colon) and toning it down leads to a reduction in symptoms. The large doses of prednisone also do this but I was still having symptoms at 40mg so I am thinking it is the imuran. Let’s hope. I intend to write a whole lot more about this ordeal – most likely in an open letter to the doctor who set this course of action in motion but that is it for now.
Other updates. We have new neighbours who are more worried about us reporting on their barking dogs (and trust me they bark alot) than we are about them. They are also over the limit so we actually feel some security for a change. All the dogs are doing fairly well. Mabel has a cancerous tumour on her leg so we have to keep it covered and give her pain killers. She is now palliative. She has done really well especially given the fact that she was coming here to die a year ago as she was peeing blood and they thought she had bladder cancer. Madison is still struggling with her leg. She has a torn cruciate ligament and you can’t do surgery on a 14 year old dog for a torn cruciate so she is on meds and anti-inflammatory and a pain killer. Kirby is great. The punk (AKA Piper) lost her toilet training for a brief bit of time but that seems to be over now. Molly is great still doing her stretches. Clio still does not know she is a dog but that is ok. Keifer is a big pain in the ass. Mackenzie has been making Deb crazy getting her up in the middle of the night to pee and not coming in. Sienna has singlehandedly convinced 4 home care nurses that pitbulls are the best dogs in the whole world. She is a great breed ambassador. I sure hope I have not forgotten anyone!
This last several months have been rough for us. I have been sick since November. We also found out that Deb has MS. She may also have rheumatoid arthritis. It never fails to amaze me that no matter what confronts us we deal with it and come out stronger the other side. After almost 10 years together we have discovered cuddling. We cuddled before but not like now. It is a daily thing and we go to bed early just so we can cuddle and talk. It seems we fall more deeply in love with each other everyday. I feel very blessed.