Sunday, October 23, 2011
OK, OK. I'll go see the surgeon
It's been a busy time with little energy to focus on coping with Crohn's disease. So I'm grateful the Lord blessed me to feel so well during the weeks leading up to my daughter Megan's wedding.
I attempted a couple of times to taper down the Prednisone dose to nothing. But every time I'd get down to about 10 mg daily, the pain and bloating would start back up, and I'd have to up the dose again. Dr. Cutler told me to take the dose that is necessary to control the symptoms. It got me through.
The wedding day was glorious. I am so happy for the newlyweds. And other than needing to watch what I ate, I felt almost normal.
Prednisone, of course, brings its side effects. I feel hungry more often. I have to shave more, and my face and abdomen are rounder. Then there's the neuropathy in my hands and feet. I'm tapering again, and I'm down to 10 mg again tomorrow. Fingers crossed.
After I saw Dr. Cutler last month, he suggested that I make an appointment with Dr. Sklow, the surgeon who removed part of my bowel seven years ago. Dr. Cutler wants Dr. Sklow's take on whether he thinks the small portion that remained inflamed should be removed, and on if he thinks that cutting adhesions outside of the bowel is a good idea. Of course, messing with scar-tissue adhesions carries the risk of creating more scar tissue and adhesions.
With the wedding imminent, I haven't called Dr. Sklow yet. I didn't want to deal with it yet. But now with the wedding a week in the past, I need to call and set up the appointment, and get the other docs to send Dr. Sklow my records. And, Dr. Cutler gave me an order for some lab tests that I've also neglected. One of them has to be done at a hospital, which makes it just that much more complicated to get done. But now it's time to do it.
OK, OK, I'll get back to paying more attention to this stuff.
I hope you are well!
Take care,
Beth
I attempted a couple of times to taper down the Prednisone dose to nothing. But every time I'd get down to about 10 mg daily, the pain and bloating would start back up, and I'd have to up the dose again. Dr. Cutler told me to take the dose that is necessary to control the symptoms. It got me through.
The wedding day was glorious. I am so happy for the newlyweds. And other than needing to watch what I ate, I felt almost normal.
Prednisone, of course, brings its side effects. I feel hungry more often. I have to shave more, and my face and abdomen are rounder. Then there's the neuropathy in my hands and feet. I'm tapering again, and I'm down to 10 mg again tomorrow. Fingers crossed.
After I saw Dr. Cutler last month, he suggested that I make an appointment with Dr. Sklow, the surgeon who removed part of my bowel seven years ago. Dr. Cutler wants Dr. Sklow's take on whether he thinks the small portion that remained inflamed should be removed, and on if he thinks that cutting adhesions outside of the bowel is a good idea. Of course, messing with scar-tissue adhesions carries the risk of creating more scar tissue and adhesions.
With the wedding imminent, I haven't called Dr. Sklow yet. I didn't want to deal with it yet. But now with the wedding a week in the past, I need to call and set up the appointment, and get the other docs to send Dr. Sklow my records. And, Dr. Cutler gave me an order for some lab tests that I've also neglected. One of them has to be done at a hospital, which makes it just that much more complicated to get done. But now it's time to do it.
OK, OK, I'll get back to paying more attention to this stuff.
I hope you are well!
Take care,
Beth
Wednesday, September 7, 2011
No surgery! At least for now. :-)
The big test was yesterday -- the double-balloon, retrograde enteroscopy. It's a colonoscopy on steroids. The balloon allows the scope to creep through the small bowel after it reaches the colon's end.
Of course, the prep for the test on Labor Day was the worst part. My family eased the pain by taking me to breakfast while I could still eat solids, before 10 a.m. Then, liquids the rest of the day as well as the not-so-yummy laxative mixed with Gatorade. I don't think I'll want blue Gatorade again for a long time. :-( The rest of it -- the diarrhea as the prep did its job -- wasn't that different from a day when I'm having a Crohn's flare.
But the findings of the test were better than I expected. No imminent surgery! Hooray! Here's what the report says:
1) Ulcerated tissue in the ileocolonic anastamosis, ? focal recurrent Crohn's
2) Normal neo-terminal ileum
3) No evidence of obstruction
The examining physician (Martin Radwin) recommended:
1) Await biopsy results
2) Follow-up: GI clinic in 2 weeks
3) Low residue diet
So what does that all mean? Some of it may be obvious, but here's my take.
1) Most of the bowel was visualized, which included the entire colon and 250 cm of small bowel, reaching the proximal ileum. Part of my ileum was removed during the 2004 surgery. The doctor doing yesterday's test reported inflammation at the site where my colon and small bowel were joined (after the scarred and impassable 50 cm were removed) during the surgery in 2004. The rest of the bowel observed showed no sign of problems internally.
2) The other issue was outside of the bowel. The doctor struggled with getting the scope through "exaggerated small bowel bends suggesting extrinsic adhesive disease." In other words, tissue outside of the bowel that was probably disturbed during the surgery in 2004, is squeezing some of the doubling-back loops that are normal in the small bowel, making the bends tighter than normal. Think of a garden hose that gets kinked. Water can still pass through, but not at the same rate or velocity it would have if the hose were loosely curled on the lawn.
Either or both of these problems could have caused the bowel obstruction last month. After a month of Prednisone(a steroid to decrease inflammation), any associated inflammation was probably markedly decreased by yesterday's test. But hopefully, what Dr. Radwin did see along with the results of the biopsies he took, will give Dr. Cutler the information he needs to help me set a treatment course that has the best chance of prolonged wellness.
My appointment to follow up with Dr. Cutler is on Friday, Sept 16. Until then, I'm just trying to stay out of trouble. More Cimzia shots tomorrow. Ouch!
Be well and take care!
Beth
Of course, the prep for the test on Labor Day was the worst part. My family eased the pain by taking me to breakfast while I could still eat solids, before 10 a.m. Then, liquids the rest of the day as well as the not-so-yummy laxative mixed with Gatorade. I don't think I'll want blue Gatorade again for a long time. :-( The rest of it -- the diarrhea as the prep did its job -- wasn't that different from a day when I'm having a Crohn's flare.
But the findings of the test were better than I expected. No imminent surgery! Hooray! Here's what the report says:
1) Ulcerated tissue in the ileocolonic anastamosis, ? focal recurrent Crohn's
2) Normal neo-terminal ileum
3) No evidence of obstruction
The examining physician (Martin Radwin) recommended:
1) Await biopsy results
2) Follow-up: GI clinic in 2 weeks
3) Low residue diet
So what does that all mean? Some of it may be obvious, but here's my take.
1) Most of the bowel was visualized, which included the entire colon and 250 cm of small bowel, reaching the proximal ileum. Part of my ileum was removed during the 2004 surgery. The doctor doing yesterday's test reported inflammation at the site where my colon and small bowel were joined (after the scarred and impassable 50 cm were removed) during the surgery in 2004. The rest of the bowel observed showed no sign of problems internally.
2) The other issue was outside of the bowel. The doctor struggled with getting the scope through "exaggerated small bowel bends suggesting extrinsic adhesive disease." In other words, tissue outside of the bowel that was probably disturbed during the surgery in 2004, is squeezing some of the doubling-back loops that are normal in the small bowel, making the bends tighter than normal. Think of a garden hose that gets kinked. Water can still pass through, but not at the same rate or velocity it would have if the hose were loosely curled on the lawn.
Either or both of these problems could have caused the bowel obstruction last month. After a month of Prednisone(a steroid to decrease inflammation), any associated inflammation was probably markedly decreased by yesterday's test. But hopefully, what Dr. Radwin did see along with the results of the biopsies he took, will give Dr. Cutler the information he needs to help me set a treatment course that has the best chance of prolonged wellness.
My appointment to follow up with Dr. Cutler is on Friday, Sept 16. Until then, I'm just trying to stay out of trouble. More Cimzia shots tomorrow. Ouch!
Be well and take care!
Beth
Monday, August 29, 2011
These balloons don't sound fun.
Waiting and trying to keep my symptoms in check -- that's the focus at this point.
The hospital sent me home August 10, feeling more like a dirty, stinky, limp dish rag than a person. The hospitalist had prescribed a cardiac diet as I left, though the high-fiber part of that would have been quite harmful. She got the low-fat part right anyway. I went with what the hospital GI doc had recommended -- low-residue, low-fat, mostly mechanical soft diet. I hasten to add, though that the staff at St. Mark's Hospital took great care of me, even though it wasn't any fun.
At home, slowly, I regained strength, tiring a little less rapidly with each day.
About 10 days after discharge from the hospital, at my follow-up visit with my GI doc, Christopher Cutler, we had a plan. He gave me a choice between two diagnostic tests: a capsule endoscopy or a double-balloon, retrograde enteroscopy. He said he'd rather have a live professional with the scope doing the enteroscopy, so he could biopsy and visualize directly whatever there is to see inside my small intestine's lumen so there was no risk of missing it as could happen as a capsule endoscopy zooms by. So I opted for that.
Trouble is, the earliest appointment is Sept 6. So I'm on Prednisone to keep symptoms minimal until then, using Ondansetron (an anti-nausea med) and liquid Lortab (narcotic pain reliever) to quell pain when it happens (like it did today). When the pain occurs, it means the obstruction is back or building again, and I revert to liquids for nourishment until it passes. Hopefully, I can prevent another emergency. And I'm trying not to worry about what the test results might show.
If scar tissue from inflammation is the culprit, there's a chance it could respond to being dilated from within, opening up the narrowed passage to prevent future obstructions. Dr. Cutler believes, based on the information he has so far from the tests in the hospital, that the problem is more likely mechanical (meaning that it is a permanent sort of obstruction whether inflammation is active or not) than inflammatory, although it is apparently made worse with inflammation. If nothing is found inside my bowel to explain the obstruction, it's proably being caused by something pressing the bowel from the outside -- something like an adhesion from the surgery I had in 2004. If that's the case, the decision of whether to venture another laparoscopic surgery will be complex, since more surgery can just cause more adhesions.
Sigh.
Meanwhile, for the past few days, I've felt pretty well, until today. Prednisone tends to give a false sense of well-being. Although it makes sleeping almost impossible for me without a sleeping pill, it gives a caffeine-like energy in the daytime, now that my endurance is getting better. At the same time, it numbs my feet, lower legs, hands, tongue and face. And it makes me kind of clumsy. Soon, if it follows the all-too familiar pattern it has in the past, my face will get fuzzy and moon-shaped. My tummy will start building up extra fat layers again. And eventually, my muscles strength will wane. Hopefully, the time between now and the test won't be long enough to realize all of those yucky side effects.
Enough already. I'm grateful to be home with my family and back at work. And I can walk around the neighborhood without exhaustion. I even started sewing an new quilt top. And most of the time, I'm not in pain. That's a good thing!
Take care of yourself. Be well.
Beth :-)
The hospital sent me home August 10, feeling more like a dirty, stinky, limp dish rag than a person. The hospitalist had prescribed a cardiac diet as I left, though the high-fiber part of that would have been quite harmful. She got the low-fat part right anyway. I went with what the hospital GI doc had recommended -- low-residue, low-fat, mostly mechanical soft diet. I hasten to add, though that the staff at St. Mark's Hospital took great care of me, even though it wasn't any fun.
At home, slowly, I regained strength, tiring a little less rapidly with each day.
About 10 days after discharge from the hospital, at my follow-up visit with my GI doc, Christopher Cutler, we had a plan. He gave me a choice between two diagnostic tests: a capsule endoscopy or a double-balloon, retrograde enteroscopy. He said he'd rather have a live professional with the scope doing the enteroscopy, so he could biopsy and visualize directly whatever there is to see inside my small intestine's lumen so there was no risk of missing it as could happen as a capsule endoscopy zooms by. So I opted for that.
Trouble is, the earliest appointment is Sept 6. So I'm on Prednisone to keep symptoms minimal until then, using Ondansetron (an anti-nausea med) and liquid Lortab (narcotic pain reliever) to quell pain when it happens (like it did today). When the pain occurs, it means the obstruction is back or building again, and I revert to liquids for nourishment until it passes. Hopefully, I can prevent another emergency. And I'm trying not to worry about what the test results might show.
If scar tissue from inflammation is the culprit, there's a chance it could respond to being dilated from within, opening up the narrowed passage to prevent future obstructions. Dr. Cutler believes, based on the information he has so far from the tests in the hospital, that the problem is more likely mechanical (meaning that it is a permanent sort of obstruction whether inflammation is active or not) than inflammatory, although it is apparently made worse with inflammation. If nothing is found inside my bowel to explain the obstruction, it's proably being caused by something pressing the bowel from the outside -- something like an adhesion from the surgery I had in 2004. If that's the case, the decision of whether to venture another laparoscopic surgery will be complex, since more surgery can just cause more adhesions.
Sigh.
Meanwhile, for the past few days, I've felt pretty well, until today. Prednisone tends to give a false sense of well-being. Although it makes sleeping almost impossible for me without a sleeping pill, it gives a caffeine-like energy in the daytime, now that my endurance is getting better. At the same time, it numbs my feet, lower legs, hands, tongue and face. And it makes me kind of clumsy. Soon, if it follows the all-too familiar pattern it has in the past, my face will get fuzzy and moon-shaped. My tummy will start building up extra fat layers again. And eventually, my muscles strength will wane. Hopefully, the time between now and the test won't be long enough to realize all of those yucky side effects.
Enough already. I'm grateful to be home with my family and back at work. And I can walk around the neighborhood without exhaustion. I even started sewing an new quilt top. And most of the time, I'm not in pain. That's a good thing!
Take care of yourself. Be well.
Beth :-)
Tuesday, August 9, 2011
The suction tube is gone! Next - surgery or not? We'll see.
The naso-gastric suction tube is out!
I was terrified, but Kim, my RN, did a great job of reassuring me and pulling it with skill and speed to minimize the gag reflex and pain. I am happy to say that my throat seems to remember how to swallow correctly without it! Hooray!
I still have a sore throat, but it's a 3/10 instead of a 6/10 in intensity.
Today's bowel X-Ray showed that attempting oral fluids should be safe, so the GI doc consulting said if my system could handle clear liquids without my abdomen becoming distended or painful again, and without vomiting, the tube should come out. If not, the tube would be our tool to decompress any new pressure.
Now that the n-g tube is gone (I won't miss it!), I'll have full liquids tonight, and advance my diet slowly, to catch early any obstruction that may develop. If nothing happens and I feel OK, I get to go home and follow up with my usual gastroenterologist, and discuss with him the possibilities of further investigation into how to treat the apparent scar tissue that could be responsible for this most recent, and other past partial and full obstructions -- some of which have resolved without hospital visits.
It seems there's a good chance I will need some sort of surgery, as the area affected is very near the site where I had surgery in 2004. This obstruction behaved more like a mechanical, or scar-tissue-like problem than an inflammatory problem, though both issues may have contributed. If my diet while in the hospital can't successfully progress to normal food without obstruction-like symptoms, surgery will be imminent, if I understand the physician correctly. (Keep in mind that sometimes I don't, especially when Morphine is in my system.) That would mean I'd have surgery before leaving the hospital.
Tonight, I'm just ecstatic to have the naso-gastric tube gone and to be hearing good news from the X-ray results. Tomorrow I'll deal with whatever the new day brings.
Thanks for reading. Take care of yourself.
Beth
I was terrified, but Kim, my RN, did a great job of reassuring me and pulling it with skill and speed to minimize the gag reflex and pain. I am happy to say that my throat seems to remember how to swallow correctly without it! Hooray!
I still have a sore throat, but it's a 3/10 instead of a 6/10 in intensity.
Today's bowel X-Ray showed that attempting oral fluids should be safe, so the GI doc consulting said if my system could handle clear liquids without my abdomen becoming distended or painful again, and without vomiting, the tube should come out. If not, the tube would be our tool to decompress any new pressure.
Now that the n-g tube is gone (I won't miss it!), I'll have full liquids tonight, and advance my diet slowly, to catch early any obstruction that may develop. If nothing happens and I feel OK, I get to go home and follow up with my usual gastroenterologist, and discuss with him the possibilities of further investigation into how to treat the apparent scar tissue that could be responsible for this most recent, and other past partial and full obstructions -- some of which have resolved without hospital visits.
It seems there's a good chance I will need some sort of surgery, as the area affected is very near the site where I had surgery in 2004. This obstruction behaved more like a mechanical, or scar-tissue-like problem than an inflammatory problem, though both issues may have contributed. If my diet while in the hospital can't successfully progress to normal food without obstruction-like symptoms, surgery will be imminent, if I understand the physician correctly. (Keep in mind that sometimes I don't, especially when Morphine is in my system.) That would mean I'd have surgery before leaving the hospital.
Tonight, I'm just ecstatic to have the naso-gastric tube gone and to be hearing good news from the X-ray results. Tomorrow I'll deal with whatever the new day brings.
Thanks for reading. Take care of yourself.
Beth
Sunday, August 7, 2011
This Bowel Obstruction Sucks
I'm writing this post from St. Mark's Hospital, attached to a naso-gastric tube about the size of a garden hose (at least it feels like one). It's emptying everything it can find that wasn't able to pass beyond the bowel obstruction in my small intestine, plus any new stomach secretions. A cute 4-year-old neighbor who visited me with his parents this afternoon identified the stuff the tube is dumping into a clear plastic container as chocolate. If only.
An IV is dripping hydrating fluids and steroids into my vein to try to calm the inflammation in the tissues where the obstruction is. Sometimes, pain killer joins in the mix. And, when I'm in bed, velcro-fastened anti-embolism wraps take turns inflating to encourage blood flow and discourage blood clots in my calves. Suffice it to say that getting ready for a trip to the bathroom or a walk in the halls takes a lot of work.
After steroids calmed a preview of this in early July, cramping with intermittent watery stool returned a couple of weeks ago. Some days were worse than others, as usual. In fact, I had several good days. I even did three hikes in Zion National Park and went to three plays last week. But the bad days were hauntingly similar to the way I felt July 2. So my GI doc ordered a CT Enterography to show details of the small bowel, looking for any strictures (narrowed areas) or other problems that could cause the pain. After fighting for a couple of days with the insurance company about paying for the test, employing help from both the HR specialist at Dave's company and a high-up customer service person at Blue Cross, we set it up.
The day before the appointment, the cramping climaxed and something broke free, gushing until I felt empty. The good part is that I was pain-free afterward. The confusing part was that I was tempted to cancel the CT because I felt better. But since the problem had recurred multiple times, including twice in the same month, I kept the appointment at St. Mark's, since it is a participating provider on our health plan. Afterward, I awaited results. The appointment was Thursday.
Enter the weekend, of course. When emergencies emerge.
Friday night was a little uncomfortable, but nothing to write home (or a blog) about, comparatively speaking. But Saturday, the cramping started kind of early. We were going to the Farmer's Market so I didn't eat breakfast. I didn't want any inconvenient bowel activity. Until we smelled the waffles at the little shop across the street. I had to have a cinnamon-peach waffle. It was glorious! And I didn't feel much different after I ate it than I did before.
So I ate a small sandwich at lunch time and kept drinking lots of water. The cramping came and went, and I still never went, if you know what I mean. We had plans to take the kids to dinner. I love Ruth's Diner in Emigration Canyon, and resolved I'd order something small and be just fine. But as we waited for our table-is-ready pager to go off, the cramping intensified. My abdomen felt distended with every swallow I'd had all day. I felt more and more unpleasant (and probably acted that way, too) as time to order neared. So I ordered a decadent chocolate malt pudding. I could limit the amount I ate; chocolate pudding is free of fiber and chunks; the chocolate and fat might just start things moving. Besides, it's yummy, and was the only thing on the menu that looked good to me.
Man, that's weird at Ruth's Diner. I'm going to have to go back as soon as I can eat good stuff again. :-)
It was yummy, but I couldn't eat much. The cramping and distention increased. I wasn't good company. Probably not the funnest Saturday family dinner ever for everyone.
On the way home, we discussed whether to go to the hospital for help. After, I called the GI doc on call, who agreed to try to help me stay out of the hospital. He called in heftier steroids for me, along with some anti-nausea stuff and pain control liquid. But he warned that a fever or vomiting should send me to the hospital. Dave and Jeff gave me a priesthood blessing (I love having faithful Mormon Elders around). Dave rushed off to the pharmacy while Megan helped me change into comfy jammies and got me a blanket. She also encouraged, that "maybe you should just go to the hospital." When Dave returned, that's what we did.
Megan was right. This obstruction needed suction to relieve the pressure building behind it. Although, now that the distention and pressure are gone, my throat hurts most. If you've ever needed a naso-gastric tube for suction, you know what I mean. If not, I hope you never need one. The hospital doctor explained that the tube would collapse under the suctioning pressure if not so fat and stiff. Bummer.
Interesting, though, that my stomach and duodenum contents managed to obstruct even the mighty nasogastric tube this afternoon. A bunch of sticky, white granules tenaciously held together, preventing anything behind them from passing. "Have you been eating sand?" the CNA asked. It was actually a bunch of the granules that fill every Pentasa capsule I take. If they're actually glopping together and contributing to the problem instead of decreasing inflammation, they're going to be fired, just like the Cimzia if it doesn't start working soon!
I'm calling my GI doc in the morning to discuss it. Well, after a bit of telephone tag, with the medical assistant, maybe I'll get the message to him anyway. My health plan doesn't cover any of the hospitals where my GI doc, who is a participating provider, is on staff. Of course.
I'll let you know what happens.
Say well!
Beth :-)
An IV is dripping hydrating fluids and steroids into my vein to try to calm the inflammation in the tissues where the obstruction is. Sometimes, pain killer joins in the mix. And, when I'm in bed, velcro-fastened anti-embolism wraps take turns inflating to encourage blood flow and discourage blood clots in my calves. Suffice it to say that getting ready for a trip to the bathroom or a walk in the halls takes a lot of work.
After steroids calmed a preview of this in early July, cramping with intermittent watery stool returned a couple of weeks ago. Some days were worse than others, as usual. In fact, I had several good days. I even did three hikes in Zion National Park and went to three plays last week. But the bad days were hauntingly similar to the way I felt July 2. So my GI doc ordered a CT Enterography to show details of the small bowel, looking for any strictures (narrowed areas) or other problems that could cause the pain. After fighting for a couple of days with the insurance company about paying for the test, employing help from both the HR specialist at Dave's company and a high-up customer service person at Blue Cross, we set it up.
The day before the appointment, the cramping climaxed and something broke free, gushing until I felt empty. The good part is that I was pain-free afterward. The confusing part was that I was tempted to cancel the CT because I felt better. But since the problem had recurred multiple times, including twice in the same month, I kept the appointment at St. Mark's, since it is a participating provider on our health plan. Afterward, I awaited results. The appointment was Thursday.
Enter the weekend, of course. When emergencies emerge.
Friday night was a little uncomfortable, but nothing to write home (or a blog) about, comparatively speaking. But Saturday, the cramping started kind of early. We were going to the Farmer's Market so I didn't eat breakfast. I didn't want any inconvenient bowel activity. Until we smelled the waffles at the little shop across the street. I had to have a cinnamon-peach waffle. It was glorious! And I didn't feel much different after I ate it than I did before.
So I ate a small sandwich at lunch time and kept drinking lots of water. The cramping came and went, and I still never went, if you know what I mean. We had plans to take the kids to dinner. I love Ruth's Diner in Emigration Canyon, and resolved I'd order something small and be just fine. But as we waited for our table-is-ready pager to go off, the cramping intensified. My abdomen felt distended with every swallow I'd had all day. I felt more and more unpleasant (and probably acted that way, too) as time to order neared. So I ordered a decadent chocolate malt pudding. I could limit the amount I ate; chocolate pudding is free of fiber and chunks; the chocolate and fat might just start things moving. Besides, it's yummy, and was the only thing on the menu that looked good to me.
Man, that's weird at Ruth's Diner. I'm going to have to go back as soon as I can eat good stuff again. :-)
It was yummy, but I couldn't eat much. The cramping and distention increased. I wasn't good company. Probably not the funnest Saturday family dinner ever for everyone.
On the way home, we discussed whether to go to the hospital for help. After, I called the GI doc on call, who agreed to try to help me stay out of the hospital. He called in heftier steroids for me, along with some anti-nausea stuff and pain control liquid. But he warned that a fever or vomiting should send me to the hospital. Dave and Jeff gave me a priesthood blessing (I love having faithful Mormon Elders around). Dave rushed off to the pharmacy while Megan helped me change into comfy jammies and got me a blanket. She also encouraged, that "maybe you should just go to the hospital." When Dave returned, that's what we did.
Megan was right. This obstruction needed suction to relieve the pressure building behind it. Although, now that the distention and pressure are gone, my throat hurts most. If you've ever needed a naso-gastric tube for suction, you know what I mean. If not, I hope you never need one. The hospital doctor explained that the tube would collapse under the suctioning pressure if not so fat and stiff. Bummer.
Interesting, though, that my stomach and duodenum contents managed to obstruct even the mighty nasogastric tube this afternoon. A bunch of sticky, white granules tenaciously held together, preventing anything behind them from passing. "Have you been eating sand?" the CNA asked. It was actually a bunch of the granules that fill every Pentasa capsule I take. If they're actually glopping together and contributing to the problem instead of decreasing inflammation, they're going to be fired, just like the Cimzia if it doesn't start working soon!
I'm calling my GI doc in the morning to discuss it. Well, after a bit of telephone tag, with the medical assistant, maybe I'll get the message to him anyway. My health plan doesn't cover any of the hospitals where my GI doc, who is a participating provider, is on staff. Of course.
I'll let you know what happens.
Say well!
Beth :-)
Sunday, July 17, 2011
OK Cimzia, you have until the NAHC conference, or you're fired!
The Cimzia injections were due on Thursday, but I put them off until Friday, because I had tickets for the midnight showing of Harry Potter and the Deathly Hallows Part 2. Just in case any side effects showed themselves, I didn't want to take a chance of missing or not enjoying the movie. It was great, by the way. My daughter, Amy, and I went back and saw it again at 11 a.m. on Friday. Good times.
So Friday, I took the two Cimzia injections. They hurt, as usual, but other than that, I didn't notice any side effects. In fact I haven't noticed ANY effects AT ALL from the Cimzia yet -- good or bad. Maybe it's too soon. Or, maybe it won't be something that works for me. Any differences I've had in GI symptoms since starting the Cimzia can't be attributed to it, I don't think.
Cimzia didn't prevent the flare up on July 4th weekend -- the one that I got the Prednisone to bring under control. And the symptom relief is directly attributable to the Prednisone, in my opinion. I was grateful for those feeling-better days. Since last time I wrote, I've eased back into solid foods. I went to a bridal shower and family reunion, and ate normal food (well, some of it anyway), and enjoyed it! Hooray! And I drove three hours each, to and from Idaho, without any emergency, don't-know-if-I-can-make-it-in-time rest stops. And GI symptoms didn't make me miss one minute of the Harry Potter finale movie. Mostly, I've been free of cramping and diarrhea until today. And it hasn't gotten that bad so far. Relatively minor at this point, other than needing to stay near a rest room for a couple of hours tonight.
In October I'm giving three 90-minute presentations at the National Association for Home Health and Hospice convention in Las Vegas. I've presented and taught on a national stage before, and have managed to avoid any embarrassing problems. You know, like having to run from the stage with hundreds of eyes following my unsuccessful attempt to get to the rest room in time (one of my nightmares, of course). But it's always required some extremely careful planning. Liquids only, intense prayers and anticipatory antidiarrheal meds on the day of my presentation seem to do the trick. But I worry that one of these times I won't be so blessed.
Even more important in October will be my daughter, Megan's wedding day. I would dearly LOVE to feel great for that!
Wouldn't it be nice if, by October, the Cimzia actually DID work, and I was symptom-free and feeling like a relatively normal person by then? For that I would be truly grateful. On the other hand, if the Cimzia HASN'T made a significant difference by then, I think I'll fire it.
OK Cimzia, did you hear that? You've got three months to make a difference! Or else!
Take care,
Beth
So Friday, I took the two Cimzia injections. They hurt, as usual, but other than that, I didn't notice any side effects. In fact I haven't noticed ANY effects AT ALL from the Cimzia yet -- good or bad. Maybe it's too soon. Or, maybe it won't be something that works for me. Any differences I've had in GI symptoms since starting the Cimzia can't be attributed to it, I don't think.
Cimzia didn't prevent the flare up on July 4th weekend -- the one that I got the Prednisone to bring under control. And the symptom relief is directly attributable to the Prednisone, in my opinion. I was grateful for those feeling-better days. Since last time I wrote, I've eased back into solid foods. I went to a bridal shower and family reunion, and ate normal food (well, some of it anyway), and enjoyed it! Hooray! And I drove three hours each, to and from Idaho, without any emergency, don't-know-if-I-can-make-it-in-time rest stops. And GI symptoms didn't make me miss one minute of the Harry Potter finale movie. Mostly, I've been free of cramping and diarrhea until today. And it hasn't gotten that bad so far. Relatively minor at this point, other than needing to stay near a rest room for a couple of hours tonight.
In October I'm giving three 90-minute presentations at the National Association for Home Health and Hospice convention in Las Vegas. I've presented and taught on a national stage before, and have managed to avoid any embarrassing problems. You know, like having to run from the stage with hundreds of eyes following my unsuccessful attempt to get to the rest room in time (one of my nightmares, of course). But it's always required some extremely careful planning. Liquids only, intense prayers and anticipatory antidiarrheal meds on the day of my presentation seem to do the trick. But I worry that one of these times I won't be so blessed.
Even more important in October will be my daughter, Megan's wedding day. I would dearly LOVE to feel great for that!
Wouldn't it be nice if, by October, the Cimzia actually DID work, and I was symptom-free and feeling like a relatively normal person by then? For that I would be truly grateful. On the other hand, if the Cimzia HASN'T made a significant difference by then, I think I'll fire it.
OK Cimzia, did you hear that? You've got three months to make a difference! Or else!
Take care,
Beth
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