Well, today felt like a bit of a set back. While my sore throat was gone when I woke up, I woke at 5:30am in EXCRUCIATING pain. My whole right side of my torso (front, side and back) was killing me! What in the heck? So I got up and watched a Hallmark movie to get my mind off it, and then laid back down about 7am and I think I passed out from the pain because I don't remember anything (and usually it's been taking me awhile to fall asleep). I had 2 hours of bliss until I woke up around 9am still in pain. So I took a DOK (docusate sodium) and senna docusate (I think they're both some type of stool softeners) and a Zanaflex a little after 9. Thankfully, within the hour my pain went from like an 8 to a 5. It was a little disconcerting because my husband and I had read how much more susceptible to UTIs you can be with this ileal conduit thing, so of course I was concerned about that. But my doctor had said that there would be 4 things that would characterize a UTI for me - pain (check), fever (no), blood (no), and we can't remember the 4th one! Anyway, I was thinking it must be gas, but wow was it painful.
I spent some time organizing my supplies in the morning to try not to think about the pain and to get ready for my homehealth nurse. The nurse at the hospital had given me like 20 ConvaTec bag kits (which included the urostomy bag, the base, an adhesive remover wipe, and a skin prep wipe. So far, those are the only bags I've used. But my home health nurse had ordered supplies for me, and I ended up with Holister bags and ConvaTec bases. I thought that was a little strange, but they do fit together fine, so when my nurse showed up around noon, he gave me some more instructions and then watched as I changed my own bag. I told him about soaking my underwear when I cleaned the stoma, so he brought me these cool disposable cloths that are waterproof on the bottom, and I tucked one around my underwear as I changed my bag and it protected the underwear perfectly! He was super encouraging and insightful and gave me several pointers along the way that helped a lot. Overall, I felt pretty good about it! The nurse took my vitals and everything was good (no fever) so he agreed that my pain was most likely gas related and suggested some prune juice (which my incredibly supportive husband immediately went and got for me). We ended up having a late lunch, and it was around then that I started passing gas and feeling some relief from the pain. I think it still took several hours (and 2 BMs later) until I could say the pain was mostly gone - probably not until like 9pm this evening. That was a long time! And now I'm just sore from my muscles guarding so much all day - ugh! As a result of the pain, I only walked twice and only because I made myself because I knew it was good for me. But I did walk on my own for the first time this evening. It was pretty slow going, but overall I felt pretty good about it.
As the day progressed I've decided I absolutely despise Holister bags! For one thing, they look like they have a skinnier profile, but they droop at the top and end up creating this huge bulge that is pretty hard to hide. I'm sure my 2 inch protuding stoma doesn't help, but the ConvaTec bags maintained their shape so they didn't stick out as much. Also, since I'm wearing dresses, the bottom of the bag hits my bare legs, and this bag seems to have sharp edges to it that makes it very uncomfortable because when I sit down the edges dig into my bare skin. I believe I will be changing my bag tomorrow to a ConvaTec bag after I take a shower. I'm hoping once my stoma goes down the Hollister bags will work better. I'm also becoming partial to ConvaTec because they sent me some samples, a nice carrying travel case fo supplies, and when I opened their box there were some words on the lid that literally made me cry. They also have this program called me+ that seems like it could be really helpful that I'm considering signing up for. I understand there's another supplier called Coloplast, so I will probably be calling them to get some samples, too. I asked my Home Health Care Nurse how I would get more supplies and he said I would need to get a prescription from my doctor. Really? That's good information to know that probably someone should have told me I'm thinking. My doctor's appointment isn't for another 2 months, but with those extra bags from the hospital I should be fine until then. But seriously, another question I didn't even know to ask ahead of time!
Today was mostly a rest day, and evidently I needed it. Thankfully, our best friends, Lee & Marie came over and she cleaned all our floors (mopped and vacuumed) and he and Tim did some incredible yard work - stuff that we've needed to do since we moved in 6 years ago! That was all so incredibly comforting to me since I can't do any of that at this point. Despite all that pain I had today, I'm still feeling so thankful for so many things, like my dear friends, Lee & Marie. I am blessed indeed!
I spent some time organizing my supplies in the morning to try not to think about the pain and to get ready for my homehealth nurse. The nurse at the hospital had given me like 20 ConvaTec bag kits (which included the urostomy bag, the base, an adhesive remover wipe, and a skin prep wipe. So far, those are the only bags I've used. But my home health nurse had ordered supplies for me, and I ended up with Holister bags and ConvaTec bases. I thought that was a little strange, but they do fit together fine, so when my nurse showed up around noon, he gave me some more instructions and then watched as I changed my own bag. I told him about soaking my underwear when I cleaned the stoma, so he brought me these cool disposable cloths that are waterproof on the bottom, and I tucked one around my underwear as I changed my bag and it protected the underwear perfectly! He was super encouraging and insightful and gave me several pointers along the way that helped a lot. Overall, I felt pretty good about it! The nurse took my vitals and everything was good (no fever) so he agreed that my pain was most likely gas related and suggested some prune juice (which my incredibly supportive husband immediately went and got for me). We ended up having a late lunch, and it was around then that I started passing gas and feeling some relief from the pain. I think it still took several hours (and 2 BMs later) until I could say the pain was mostly gone - probably not until like 9pm this evening. That was a long time! And now I'm just sore from my muscles guarding so much all day - ugh! As a result of the pain, I only walked twice and only because I made myself because I knew it was good for me. But I did walk on my own for the first time this evening. It was pretty slow going, but overall I felt pretty good about it.
As the day progressed I've decided I absolutely despise Holister bags! For one thing, they look like they have a skinnier profile, but they droop at the top and end up creating this huge bulge that is pretty hard to hide. I'm sure my 2 inch protuding stoma doesn't help, but the ConvaTec bags maintained their shape so they didn't stick out as much. Also, since I'm wearing dresses, the bottom of the bag hits my bare legs, and this bag seems to have sharp edges to it that makes it very uncomfortable because when I sit down the edges dig into my bare skin. I believe I will be changing my bag tomorrow to a ConvaTec bag after I take a shower. I'm hoping once my stoma goes down the Hollister bags will work better. I'm also becoming partial to ConvaTec because they sent me some samples, a nice carrying travel case fo supplies, and when I opened their box there were some words on the lid that literally made me cry. They also have this program called me+ that seems like it could be really helpful that I'm considering signing up for. I understand there's another supplier called Coloplast, so I will probably be calling them to get some samples, too. I asked my Home Health Care Nurse how I would get more supplies and he said I would need to get a prescription from my doctor. Really? That's good information to know that probably someone should have told me I'm thinking. My doctor's appointment isn't for another 2 months, but with those extra bags from the hospital I should be fine until then. But seriously, another question I didn't even know to ask ahead of time!
Today was mostly a rest day, and evidently I needed it. Thankfully, our best friends, Lee & Marie came over and she cleaned all our floors (mopped and vacuumed) and he and Tim did some incredible yard work - stuff that we've needed to do since we moved in 6 years ago! That was all so incredibly comforting to me since I can't do any of that at this point. Despite all that pain I had today, I'm still feeling so thankful for so many things, like my dear friends, Lee & Marie. I am blessed indeed!
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