Monday was my scheduled follow-up appointment to see if there is still blood in my urine (microscopic amounts, but it seems to be getting everyone’s attention none the less.) I’d made this appointment several weeks ago so as to carefully time it at such a point that we could be pretty sure my period had nothing to do with the trace amounts of blood.
Since making the appointment, I’ve noticed an increased frequency of diarrhea, sores in my mouth that appear one day and are gone the next, irritation and sometimes bleeding around my stoma, more joint pain than usual, acid reflux (which has never been an issue for me before), lots of gas (I’m the belching queen these days) and very mild stomach cramps right below my rib cage about 20 to 30 minutes after eating. They sort of feel like gas.
I’d mentioned all of these symptoms to Kevin right after conference, and we’d agreed to keep an eye on them. He was worried I might be having an HPS GI flare-up. I had the same worry. I know all the signs. But, it’s been 14 years since I last had any GI issues related to HPS, so I was hoping (still am) that this is just some sort of tummy bug.
But, the issues haven’t gone away. They come and go, which makes it very hard to tell if you’re really having a problem, or if all the problems are related. In my personal GI experience, that was the problem. The last time I had bad GI issues they started out so mild that I wasn’t even really aware of them without the benefit of hindsight. And even when they did progress to such a point that I sought out a doctor, they were so fleeting that no one took my complaints seriously and started running tests until I’d had the problems for six months and started dropping weight rapidly and drastically (not that I wouldn’t mind that symptom for a little while!)
At the HPS conference in the scientific advisory board meeting as the doctors discussed the nature of the GI issues associated with HPS, I sat there thinking in my head, hmmm….sort of sounds like me lately.
Before conference I was having some diarrhea, the mouth sores and the joint pain, but I chalked it up to stress. I was stressed out at work trying to get everything ready so no one would miss me while I was at the conference. What I didn’t realize until this weekend is that I’ve really been having the on and off diarrhea since January. I was reading back through some of my blog entries and realized it really has been going on a little longer than I’d thought. (When I say on and off diarrhea, I mean one for several days, off for several days, not the typical variations with different kinds of food.)
Last week, from Wednesday to Sunday evening, my output was dark and it was like water. Sunday I went through several bags trying to get one to stick, but the skin around the stoma was bleeding and irritated. I couldn’t see well enough to determine if there was some little ulcer there, or if all the diarrhea was just causing the appliance to leak, and thus getting all of those digestive acids right onto my skin and causing a skin irritation. Whichever it was, it was rapidly becoming quite the problem. Once the skin gets to bleeding it can bleed a lot and take forever to heal because of the HPS. It’s a real mess! And every time the appliance leaks you’ve got to rip it off, causing further trauma to the skin and making things even worse!
I decided it was time to say something.
I tried to call the doctor’s office to warn them, but their line was busy all morning. Must be cold and flu season.
So, I showed up and dropped the bomb shells on my poor, unsuspecting doctor, who, since I can never seem to get an appointment with my own doctor when I’m having a real problem, is still relatively new to me. She doesn’t know me yet and I haven’t “trained” her in all the little HPS “things.”
I felt so bad. She came in the room ready to talk about the urine and I went at her like a machine gun firing off my list of problems and concerns. I knew I was only scheduled for 15 minutes. Yeah, yeah, nice to see you – lets get down to business because we’ve got a lot to cover. Several years ago I did a story about software for scheduling appointments in doctors’ offices. Every since then I’ve been really sensitive to why it’s a bad idea to make an appointment for one thing, and show up with another problem.
Dr. Baijal was very nice about the whole thing. She looked at the urine test results, and sure enough, the blood is still there. The ultrasound of my kidneys and bladder showed nothing. So, we had just about decided to chalk up the trace amounts to blood to having a bleeding disorder (as I sat there with a bleeding lip from my chapped lips, just to drive the whole bleeding disorder point home.)
We moved onto the bowel issues. I explained why I was concerned. Dr. Baijal seemed to be trying to remember all the HPS stuff I’d thrown at her on the last visit (she’s really been a good sport about it!) I produced the HPS brochure and that seemed to help. In my mind, however, I couldn’t help but giggle.
I never quite know how to handle not only explaining that I have HPS, but that I’m also Vice President and Director of Outreach for the HPS Network. Donna and I wrote that brochure in a hotel room in San Diego while at the American Thoracic Society meeting. I don’t want to seem like I’m arrogant to the doctor. Lord knows I certainly don’t know everything. I’m not a doctor. At the same time, I read every paper I find on HPS. I talk to fellow HPS patients every single night. My knowledge of HPS isn’t exactly confined to the Network’s brochure. I actually might be able to help answer some questions if they’d just ask.
After discussing these problems Dr. Baijal wanted to see my stoma etc. So, I hopped up on the table. She tested the output for blood, but it was negative. This is a great sign, but at the same time, it’s been my observation of other HPS’ers that you can be pretty ill and still not have blood in your stool. (although the last time around when I was very inflamed, I did have a lot of blood.)
Then Dr. Baijal decided she wanted to see the ostomy site. I feel terrible. I assumed that she’d probably dealt with or seen ostomies before. Granted, she’s not a GI person, but I figured at some point in medical school she must have done a rotation where she’d maybe experienced one.
Usually when doctors have gone to look at my stoma site, they’ve preferred to deal with the appliance on their own. So, I just laid back to let her do her thing. She gingerly pulled on it and asked how it would go back on? I had brought a change of appliance – no worries. I told her she might want to have some paper towels ready. I don’t think she quite understood how the ostomy appliance worked.
She pulled it off, and of course, it decided to do its best imitation of a volcano sending projectile poop up at her. Surprise!
She looked at the stoma and it was fine. She looked at the skin around the stoma and it was very red, inflamed and raw looking, but there weren’t any little ulcer looking things. That’s what I was worried about – and I can’t always see well enough to tell, especially if they’re close to the stoma, or on the under side of it.
But when she tried to stick the eakin seal on the plastic that keeps the appliance sterile before you put it on, I realized she was a little out of her league. I talked her through it and we got an appliance on, albeit upside down. I felt so bad for her!
She disappeared for what seemed like forever. When she came back she’d thought better of the idea of chalking up the blood in the urine to “just an HPS thing” and handed me a referral to a urologist. Okay, that’s fine. I think it probably isn’t a big deal, but after hearing about Sheena’s recent kidney adventures, if they want to poke around on that issue, I’ll play along.
She didn’t seem to keen on making a GI referral. She thought the whole thing could be completely unrelated and that we should wait and see if it continues. But, she said to ask NIH about it, and if they wanted me to see a GI specialist she’d make the referral. Fair enough.
Then she referred me to the wound care clinic to take care of the ostomy issues. The only problem is the next appointment isn’t for another 20 days. That’s pretty much useless! Given the nature of HPS and bleeding, this problem will either clear up by then, or it will be such a bleeding mess that I’ll never be able to keep a pouch on and in 20 days I probably won’t have a job. You can’t really go to work with poop leaking out all over you! I wasn’t a happy camper about this part.
I went home and, of course, had another leak. Today I went to work praying all the way there that I’d make it through the day without a leak sending me home. I’m already so far behind! And, I did make it through the day.
Today I had no leaks. I went off the “mush” diet and ate real food and it went okay. There was some diarrhea, but some “normal” too. I did feel pretty tired all day and had joint pain and some reflux, but mild.
So, now I’m waiting to hear what NIH thinks. I’m hoping the GI issues just go away as mysteriously as they appeared. Of course, probably about the time everyone wants to look into them, they’ll be gone again.
Since making the appointment, I’ve noticed an increased frequency of diarrhea, sores in my mouth that appear one day and are gone the next, irritation and sometimes bleeding around my stoma, more joint pain than usual, acid reflux (which has never been an issue for me before), lots of gas (I’m the belching queen these days) and very mild stomach cramps right below my rib cage about 20 to 30 minutes after eating. They sort of feel like gas.
I’d mentioned all of these symptoms to Kevin right after conference, and we’d agreed to keep an eye on them. He was worried I might be having an HPS GI flare-up. I had the same worry. I know all the signs. But, it’s been 14 years since I last had any GI issues related to HPS, so I was hoping (still am) that this is just some sort of tummy bug.
But, the issues haven’t gone away. They come and go, which makes it very hard to tell if you’re really having a problem, or if all the problems are related. In my personal GI experience, that was the problem. The last time I had bad GI issues they started out so mild that I wasn’t even really aware of them without the benefit of hindsight. And even when they did progress to such a point that I sought out a doctor, they were so fleeting that no one took my complaints seriously and started running tests until I’d had the problems for six months and started dropping weight rapidly and drastically (not that I wouldn’t mind that symptom for a little while!)
At the HPS conference in the scientific advisory board meeting as the doctors discussed the nature of the GI issues associated with HPS, I sat there thinking in my head, hmmm….sort of sounds like me lately.
Before conference I was having some diarrhea, the mouth sores and the joint pain, but I chalked it up to stress. I was stressed out at work trying to get everything ready so no one would miss me while I was at the conference. What I didn’t realize until this weekend is that I’ve really been having the on and off diarrhea since January. I was reading back through some of my blog entries and realized it really has been going on a little longer than I’d thought. (When I say on and off diarrhea, I mean one for several days, off for several days, not the typical variations with different kinds of food.)
Last week, from Wednesday to Sunday evening, my output was dark and it was like water. Sunday I went through several bags trying to get one to stick, but the skin around the stoma was bleeding and irritated. I couldn’t see well enough to determine if there was some little ulcer there, or if all the diarrhea was just causing the appliance to leak, and thus getting all of those digestive acids right onto my skin and causing a skin irritation. Whichever it was, it was rapidly becoming quite the problem. Once the skin gets to bleeding it can bleed a lot and take forever to heal because of the HPS. It’s a real mess! And every time the appliance leaks you’ve got to rip it off, causing further trauma to the skin and making things even worse!
I decided it was time to say something.
I tried to call the doctor’s office to warn them, but their line was busy all morning. Must be cold and flu season.
So, I showed up and dropped the bomb shells on my poor, unsuspecting doctor, who, since I can never seem to get an appointment with my own doctor when I’m having a real problem, is still relatively new to me. She doesn’t know me yet and I haven’t “trained” her in all the little HPS “things.”
I felt so bad. She came in the room ready to talk about the urine and I went at her like a machine gun firing off my list of problems and concerns. I knew I was only scheduled for 15 minutes. Yeah, yeah, nice to see you – lets get down to business because we’ve got a lot to cover. Several years ago I did a story about software for scheduling appointments in doctors’ offices. Every since then I’ve been really sensitive to why it’s a bad idea to make an appointment for one thing, and show up with another problem.
Dr. Baijal was very nice about the whole thing. She looked at the urine test results, and sure enough, the blood is still there. The ultrasound of my kidneys and bladder showed nothing. So, we had just about decided to chalk up the trace amounts to blood to having a bleeding disorder (as I sat there with a bleeding lip from my chapped lips, just to drive the whole bleeding disorder point home.)
We moved onto the bowel issues. I explained why I was concerned. Dr. Baijal seemed to be trying to remember all the HPS stuff I’d thrown at her on the last visit (she’s really been a good sport about it!) I produced the HPS brochure and that seemed to help. In my mind, however, I couldn’t help but giggle.
I never quite know how to handle not only explaining that I have HPS, but that I’m also Vice President and Director of Outreach for the HPS Network. Donna and I wrote that brochure in a hotel room in San Diego while at the American Thoracic Society meeting. I don’t want to seem like I’m arrogant to the doctor. Lord knows I certainly don’t know everything. I’m not a doctor. At the same time, I read every paper I find on HPS. I talk to fellow HPS patients every single night. My knowledge of HPS isn’t exactly confined to the Network’s brochure. I actually might be able to help answer some questions if they’d just ask.
After discussing these problems Dr. Baijal wanted to see my stoma etc. So, I hopped up on the table. She tested the output for blood, but it was negative. This is a great sign, but at the same time, it’s been my observation of other HPS’ers that you can be pretty ill and still not have blood in your stool. (although the last time around when I was very inflamed, I did have a lot of blood.)
Then Dr. Baijal decided she wanted to see the ostomy site. I feel terrible. I assumed that she’d probably dealt with or seen ostomies before. Granted, she’s not a GI person, but I figured at some point in medical school she must have done a rotation where she’d maybe experienced one.
Usually when doctors have gone to look at my stoma site, they’ve preferred to deal with the appliance on their own. So, I just laid back to let her do her thing. She gingerly pulled on it and asked how it would go back on? I had brought a change of appliance – no worries. I told her she might want to have some paper towels ready. I don’t think she quite understood how the ostomy appliance worked.
She pulled it off, and of course, it decided to do its best imitation of a volcano sending projectile poop up at her. Surprise!
She looked at the stoma and it was fine. She looked at the skin around the stoma and it was very red, inflamed and raw looking, but there weren’t any little ulcer looking things. That’s what I was worried about – and I can’t always see well enough to tell, especially if they’re close to the stoma, or on the under side of it.
But when she tried to stick the eakin seal on the plastic that keeps the appliance sterile before you put it on, I realized she was a little out of her league. I talked her through it and we got an appliance on, albeit upside down. I felt so bad for her!
She disappeared for what seemed like forever. When she came back she’d thought better of the idea of chalking up the blood in the urine to “just an HPS thing” and handed me a referral to a urologist. Okay, that’s fine. I think it probably isn’t a big deal, but after hearing about Sheena’s recent kidney adventures, if they want to poke around on that issue, I’ll play along.
She didn’t seem to keen on making a GI referral. She thought the whole thing could be completely unrelated and that we should wait and see if it continues. But, she said to ask NIH about it, and if they wanted me to see a GI specialist she’d make the referral. Fair enough.
Then she referred me to the wound care clinic to take care of the ostomy issues. The only problem is the next appointment isn’t for another 20 days. That’s pretty much useless! Given the nature of HPS and bleeding, this problem will either clear up by then, or it will be such a bleeding mess that I’ll never be able to keep a pouch on and in 20 days I probably won’t have a job. You can’t really go to work with poop leaking out all over you! I wasn’t a happy camper about this part.
I went home and, of course, had another leak. Today I went to work praying all the way there that I’d make it through the day without a leak sending me home. I’m already so far behind! And, I did make it through the day.
Today I had no leaks. I went off the “mush” diet and ate real food and it went okay. There was some diarrhea, but some “normal” too. I did feel pretty tired all day and had joint pain and some reflux, but mild.
So, now I’m waiting to hear what NIH thinks. I’m hoping the GI issues just go away as mysteriously as they appeared. Of course, probably about the time everyone wants to look into them, they’ll be gone again.
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