Despite "running" in the title, I won't be talking about it today :)
With the rapid tapering of prednisone and my other issues, I've felt pretty awful most of the last month. Some of the symptoms of this "awfulness" include:
Body zaps:
This is a new symptom for me. If involves a feeling almost like electric current running through my body and out to my hands and feet. It isn't actually painful but it is unpleasant.
Feeling hot & cold
Over the last month or so I've suffered from bouts of feeling both hot and cold. Due to the several instances of sepsis I've suffered over the last couple of months, I check my temperature every time I feel hot or cold. So far, I've not had a fever. For these, I just start feeling warm and break out in a sweat, despite having no fever or sometimes I just start feeling very cold and need to dress more warmly.
Low energy
This isn't so much a feeling of exhaustion for me as more of a feeling of lethargy - not wanting to do anything. Earlier I experienced periods of feeling severe exhaustion, however, that hasn't been a problem lately.
Acne
I experienced some problems with acne from the steroids earlier during this flare. However, after my hospital stay (they had me on 60 mg of solu-medrol which equates to roughly 75 mg of prednisone), I broke out in a severe case of acne. After I returned home, they had me drop down to my pre-hospital dose of 30 mg / day of prednisone. Today I dropped down to 0 mg (Hurrah!) but I still have the acne on my back. I'm hoping it'll clear up by the end of my hospital stay next week.
Gut pain
As I mentioned in earlier posts, I actually suffer multiple different kinds of gut pain. I assume different things cause the different pains. The main pains include a dull raw pain near my Crohn's which I assume is due to the abscess (usually rates between a 1 and a 4 on my pain scale), sharp stabbing cramping pains which I assume are due to cramping (usually rates between a 3 and a 6 on my pain scale), bloating and a sense of fullness (which I'll discuss in the next section), and an occasional burning sensation (usually rates about a 3 on my pain scale).
The norco works well in suppressing abdominal pain for me. A full pill generally drops the pain level by about 2 on my scale. Since my release from the hospital, I've generally been taking full pills rather than half pills. On most days I've needed 2-3 of the pain pills but I've had a few days with no pain medication and two days on which I was eagerly awaiting my next dose of pain medication.
Bloating
My abdomen has been distended continuously since before my admission to the hospital on 7/19. Since then the distension has been worse. When I've had more severe bloating, it's accompanied by a full sensation which makes me feel like I've eaten a Thanksgiving dinner and simply don't have room to eat anything else. I can have these feeling even when I haven't eaten for 12 hours or more. Occasionally my distension eases somewhat and my belly gets softer. When this happens I take the opportunity to eat :)
Intermittent nausea
Some days I've had nausea and need to treat for nausea through the day and other days I don't have it. I'm not sure why the nausea comes and goes like this. I have generic phergan to help with the nausea but I usually start by sucking on peppermint candies. These are often sufficient to suppress the nausea and they don't make me sleepy. When I'm feeling nauseated, I can only tolerate the thought of eating a couple of foods, the two that work the best for me are chicken broth and sherbet (I prefer mango). So far I've been able to eat some sherbet no matter how nauseated I've felt.
Weight loss
After my release from the hospital I lost about 5 lbs. My nurse told me to try to put some weight on in preparation for surgery. Since I'll almost certainly have a small bowel resection, they won't let me eat until after my bowels start moving again. This can take a few days or a week. Since being asked to try to put on weight, I've managed to get my weight back up to normal but I haven't been able to gain any more weight.
Aches and pains
I've been told that rapidly tapering off prednisone, that I could suffer from joint pain. Mostly this hasn't been a problem but on some days I have had some joint pain. When I have joint pain, it has mostly been in my knees but I've also had some shoulder and ankle pains. I can't really take any ibuprofen or aspirin for these pains so I've just lived with them.
Edema
This hasn't been too bad for me. I did take one diuretic since my release from the hospital. This was primarily to deal with swelling in my legs that made me knees and ankles feel stiff and swollen.
Numbness & tingling
I'm not certain what this relates to. I assume that it has as much to do with my use of Benadryl as anything else. I usually have the numbness and tingling after taking Benadryl.
Loss of libido
My desire for sex has dropped considerably. In fact, I haven't initiated or even hinted at wanting sex for more than a month now. When my wife initiated earlier this week, I was interested but for the first time in my life I wasn't able to have intercourse :( . Thankfully, I was able to satisfy her in other ways :) . I attribute part of the problem to pain, part to pain medications, and part to my body just not having the energy for that sort of thing.
After my last surgery, my libido didn't decline and I was able to have intercourse even before the doctor officially approved of the adventure. My loss of libido is more of a loss of interest in initiating an encounter. When my wife has initiated, I've generally been receptive so maybe the problem is more related to impotence. Luckily there are medications that can help with this. If my problems persist after surgery, I'll ask my doctor about a prescription for one of these drugs.
With the rapid tapering of prednisone and my other issues, I've felt pretty awful most of the last month. Some of the symptoms of this "awfulness" include:
- Body zaps
- Feeling hot / feeling cold
- Low energy
- Terrible acne, especially on my back
- Continuous pain in my gut
- Bloating
- Intermittent nausea
- Weight loss
- Some aches and pains
- Edema
- Some intermittent tingling and numbness of various parts of my body
- Loss of libedo
Body zaps:
This is a new symptom for me. If involves a feeling almost like electric current running through my body and out to my hands and feet. It isn't actually painful but it is unpleasant.
Feeling hot & cold
Over the last month or so I've suffered from bouts of feeling both hot and cold. Due to the several instances of sepsis I've suffered over the last couple of months, I check my temperature every time I feel hot or cold. So far, I've not had a fever. For these, I just start feeling warm and break out in a sweat, despite having no fever or sometimes I just start feeling very cold and need to dress more warmly.
Low energy
This isn't so much a feeling of exhaustion for me as more of a feeling of lethargy - not wanting to do anything. Earlier I experienced periods of feeling severe exhaustion, however, that hasn't been a problem lately.
Acne
I experienced some problems with acne from the steroids earlier during this flare. However, after my hospital stay (they had me on 60 mg of solu-medrol which equates to roughly 75 mg of prednisone), I broke out in a severe case of acne. After I returned home, they had me drop down to my pre-hospital dose of 30 mg / day of prednisone. Today I dropped down to 0 mg (Hurrah!) but I still have the acne on my back. I'm hoping it'll clear up by the end of my hospital stay next week.
Gut pain
As I mentioned in earlier posts, I actually suffer multiple different kinds of gut pain. I assume different things cause the different pains. The main pains include a dull raw pain near my Crohn's which I assume is due to the abscess (usually rates between a 1 and a 4 on my pain scale), sharp stabbing cramping pains which I assume are due to cramping (usually rates between a 3 and a 6 on my pain scale), bloating and a sense of fullness (which I'll discuss in the next section), and an occasional burning sensation (usually rates about a 3 on my pain scale).
The norco works well in suppressing abdominal pain for me. A full pill generally drops the pain level by about 2 on my scale. Since my release from the hospital, I've generally been taking full pills rather than half pills. On most days I've needed 2-3 of the pain pills but I've had a few days with no pain medication and two days on which I was eagerly awaiting my next dose of pain medication.
Bloating
My abdomen has been distended continuously since before my admission to the hospital on 7/19. Since then the distension has been worse. When I've had more severe bloating, it's accompanied by a full sensation which makes me feel like I've eaten a Thanksgiving dinner and simply don't have room to eat anything else. I can have these feeling even when I haven't eaten for 12 hours or more. Occasionally my distension eases somewhat and my belly gets softer. When this happens I take the opportunity to eat :)
Intermittent nausea
Some days I've had nausea and need to treat for nausea through the day and other days I don't have it. I'm not sure why the nausea comes and goes like this. I have generic phergan to help with the nausea but I usually start by sucking on peppermint candies. These are often sufficient to suppress the nausea and they don't make me sleepy. When I'm feeling nauseated, I can only tolerate the thought of eating a couple of foods, the two that work the best for me are chicken broth and sherbet (I prefer mango). So far I've been able to eat some sherbet no matter how nauseated I've felt.
Weight loss
After my release from the hospital I lost about 5 lbs. My nurse told me to try to put some weight on in preparation for surgery. Since I'll almost certainly have a small bowel resection, they won't let me eat until after my bowels start moving again. This can take a few days or a week. Since being asked to try to put on weight, I've managed to get my weight back up to normal but I haven't been able to gain any more weight.
Aches and pains
I've been told that rapidly tapering off prednisone, that I could suffer from joint pain. Mostly this hasn't been a problem but on some days I have had some joint pain. When I have joint pain, it has mostly been in my knees but I've also had some shoulder and ankle pains. I can't really take any ibuprofen or aspirin for these pains so I've just lived with them.
Edema
This hasn't been too bad for me. I did take one diuretic since my release from the hospital. This was primarily to deal with swelling in my legs that made me knees and ankles feel stiff and swollen.
Numbness & tingling
I'm not certain what this relates to. I assume that it has as much to do with my use of Benadryl as anything else. I usually have the numbness and tingling after taking Benadryl.
Loss of libido
My desire for sex has dropped considerably. In fact, I haven't initiated or even hinted at wanting sex for more than a month now. When my wife initiated earlier this week, I was interested but for the first time in my life I wasn't able to have intercourse :( . Thankfully, I was able to satisfy her in other ways :) . I attribute part of the problem to pain, part to pain medications, and part to my body just not having the energy for that sort of thing.
After my last surgery, my libido didn't decline and I was able to have intercourse even before the doctor officially approved of the adventure. My loss of libido is more of a loss of interest in initiating an encounter. When my wife has initiated, I've generally been receptive so maybe the problem is more related to impotence. Luckily there are medications that can help with this. If my problems persist after surgery, I'll ask my doctor about a prescription for one of these drugs.
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