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 :-)
Monday, August 29, 2011
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 :-)
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