Hey everyone!
I know I haven't been posting much. I've been really sick since about 2012, but it took a steep turn this past May/June, with Crohn's disease. Don't get me wrong. I've always had Crohn's disease (not that I knew it), but this past 5-6 months has been killer.
I've been on the brink of a bowel obstruction for over a year now. I've had multiple CT scans and emergency room visits. I have four medicines, currently, to try to regulate my bowels, but they're not quite working properly, because the problem is inflammation in my ileum (part of small intestine). So, on days like today, I feel like my intestines are balloons about to pop, and I take the max dose of all of my meds, hoping for relief. And today, it worked, so I can go to bed, instead of going to the ER.
The road to diagnosis was long and painful, and included three abdominal surgeries. My symptoms always seemed like severe endometriosis (which several of my friends suffer from), but I never had severe endo. In all three of my abdominal surgeries, the doctors removed "extensive" inflammation and adhesions from around the outside of my intestines. I suffer from a rare disease called "diffuse Crohn's" or, medically, jejunoileitis.
Now, you may be thinking, what is rare? Well, approximately 565,000 (or, now 565,001?) people in the US have Crohn's, so that is 0.17% of the population of the US (321,000,000). Then, 5% of people with Crohn's disease have jejunoileitis, or about 28,500 people, which is 0.0088% of the population.
Let me add, to the boring stuff, that psoriasis, a related disease, runs in my family. Psoriasis, if you look it up, or click here, is pretty easy to understand. Essentially I have psoriasis throughout all of my small intestine. Literally.
Ok, so the good news is immunosuppressants like Humira worked. I've only tried Humira, and it made me so dizzy that I couldn't get out of bed, but it worked for a lot of other issues, like inflammation. So, I find out on Nov 19th which drug I'll be using next. Hopefully that one won't have such severe side effects.
Until then, I feel pretty boring. I'm catching up on TV and video games. Although, now that my vitamins are working, I can read grad school stuff occasionally. But on days like today, my only friend is my bed.
Wednesday, November 11, 2015
Wednesday, November 4, 2015
I really have Crohn's disease (and endometriosis).
Hey everyone,
I've been absent for a while from blogging, but I'm determined to do at least one post per week. It's been difficult to produce content, since I've been sick. This post is going to detail some of my suffering over this past summer, which reflects multiple flares that I've had since I was 16. But I'm doing a lot of research, and hope to discuss ways to move forward, both from my perspective and the perspective of those who have had a Crohn's diagnosis for a long time. I hope this is a place where people with any chronic illness can find useful information, and discuss important issues.
Two questions that significantly frustrate me are: "How are you doing today," and, "What did you do today/this week/this weekend."
I am in a full-on, occasionally life-threatening flare up of Crohn's disease. I've been hospitalized for a GI bleed (in September), and my condition has been getting worse since 2011. Good days, for me, are days where I can get out of bed and eat food, I don't have diarrhea, and I don't have to go to the ER. Great days for me are days when I can go grocery shopping by myself. I spend a lot of days in bed. I am very, very sick, and this limits my ability to come up with interesting topics for conversation.
I've asked my friends and family members to avoid the above questions, and questions similar to them, and to come up with positive topics for discussion instead. This has greatly improved my willingness to talk to people.
That said, here is a typical day for me, since my inflammatory markers have been high enough to diagnose an autoimmune disorder:
I wake up exhausted and in pain. I have osteoarthritis in most of my joints, but especially my lower back, hands, elbows, shoulders, hips and knees. It takes at least an hour for me to tolerate my pain enough to get out of bed. All I can take for this is Tylenol Arthritis. I am allergic to ALL over the counter anti-inflammatories (aspirin, motrin, ibuprofen, Aleve, etc), and doctors are attempting to no longer put people like me on steroids, because the cycle of flare ups and remissions seems to make the symptoms worse. Usually, I also have to run (or, lately, crutch) to the bathroom. So, I wake up in pain, run to the bathroom, and then crawl back into bed.
On most days, I am able to get up, eat a small meal and take my medicine. I also lightly clean the apartment, and talk to my awesome roomie, if she's home. Then I crawl back into bed. Eating hurts. I get tired, run a fever and have increased abdominal and arthritis pain every time I eat. If I need to go somewhere, I eat at least three hours before I have to leave, or skip eating completely. Most of the food I eat is bland, and I'm on this crazy FODMAP diet, because I have irritable bowel syndrome (IBS) in addition to Crohn's, which is pretty common.
Luckily, I am recovering from my vitamin deficiencies, so my brain is working a little better, and I can read for short periods of time - both for school and for leisure. I can also play games and catch up with people. I still can't handle a heavy reading load, and I've hit a plateau. Really, I've hit a plateau in most aspects of my life, and I won't be able to do more until I get proper treatment.
In mid-October, my doctors put me on Humira. I spent the first week in bed, because I was so dizzy that I had 2 falls. So, my doctors took me off of Propanolol, temporarily. During the second week, I had no arthritis pain! This was a terrible, terrible thing, because the dizziness was a reaction to the Humira, so they discontinued it, and my arthritis pain returned about 5 days later. The good news is that if Humira worked, then other immunosuppressants are likely to work.
The other good news is that my current medications and diet haven't been terrorizing my intestines, which means, once I start healing, I should be fine for a few years.
Hopefully you are doing much better than I am.
<3 Alison
I've been absent for a while from blogging, but I'm determined to do at least one post per week. It's been difficult to produce content, since I've been sick. This post is going to detail some of my suffering over this past summer, which reflects multiple flares that I've had since I was 16. But I'm doing a lot of research, and hope to discuss ways to move forward, both from my perspective and the perspective of those who have had a Crohn's diagnosis for a long time. I hope this is a place where people with any chronic illness can find useful information, and discuss important issues.
Two questions that significantly frustrate me are: "How are you doing today," and, "What did you do today/this week/this weekend."
I am in a full-on, occasionally life-threatening flare up of Crohn's disease. I've been hospitalized for a GI bleed (in September), and my condition has been getting worse since 2011. Good days, for me, are days where I can get out of bed and eat food, I don't have diarrhea, and I don't have to go to the ER. Great days for me are days when I can go grocery shopping by myself. I spend a lot of days in bed. I am very, very sick, and this limits my ability to come up with interesting topics for conversation.
I've asked my friends and family members to avoid the above questions, and questions similar to them, and to come up with positive topics for discussion instead. This has greatly improved my willingness to talk to people.
That said, here is a typical day for me, since my inflammatory markers have been high enough to diagnose an autoimmune disorder:
I wake up exhausted and in pain. I have osteoarthritis in most of my joints, but especially my lower back, hands, elbows, shoulders, hips and knees. It takes at least an hour for me to tolerate my pain enough to get out of bed. All I can take for this is Tylenol Arthritis. I am allergic to ALL over the counter anti-inflammatories (aspirin, motrin, ibuprofen, Aleve, etc), and doctors are attempting to no longer put people like me on steroids, because the cycle of flare ups and remissions seems to make the symptoms worse. Usually, I also have to run (or, lately, crutch) to the bathroom. So, I wake up in pain, run to the bathroom, and then crawl back into bed.
On most days, I am able to get up, eat a small meal and take my medicine. I also lightly clean the apartment, and talk to my awesome roomie, if she's home. Then I crawl back into bed. Eating hurts. I get tired, run a fever and have increased abdominal and arthritis pain every time I eat. If I need to go somewhere, I eat at least three hours before I have to leave, or skip eating completely. Most of the food I eat is bland, and I'm on this crazy FODMAP diet, because I have irritable bowel syndrome (IBS) in addition to Crohn's, which is pretty common.
Luckily, I am recovering from my vitamin deficiencies, so my brain is working a little better, and I can read for short periods of time - both for school and for leisure. I can also play games and catch up with people. I still can't handle a heavy reading load, and I've hit a plateau. Really, I've hit a plateau in most aspects of my life, and I won't be able to do more until I get proper treatment.
In mid-October, my doctors put me on Humira. I spent the first week in bed, because I was so dizzy that I had 2 falls. So, my doctors took me off of Propanolol, temporarily. During the second week, I had no arthritis pain! This was a terrible, terrible thing, because the dizziness was a reaction to the Humira, so they discontinued it, and my arthritis pain returned about 5 days later. The good news is that if Humira worked, then other immunosuppressants are likely to work.
The other good news is that my current medications and diet haven't been terrorizing my intestines, which means, once I start healing, I should be fine for a few years.
Hopefully you are doing much better than I am.
<3 Alison
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