Just wondering if anyone has heard from Shell, our friend "across the pond"? Last post was about liver issues...hope all is well.
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I was thinking of Shell as well. I have a neighbor who is a surgeon that does organ transplants including liver transplants. He told me that he has done liver transplants for patients with PSC. I believe that is what Shell posted she has.
Shell is doing well. Ill let her know folks were asking for her!
Hi Guys, 
Sorry I haven't been around much. I do lurk from time to time but it has been a while. Jill let me know you were asking after me. Hope you are all doing well.
I'm doing pretty good at the moment. My PSC is in the early stages so not too much damage so far and no real symptoms apart from the occasional URQ pain. The problem that bothers me the most is my hiatal hernia. My GI said he wouldn't refer me for surgery until my liver enzymes have come down some more. They were still way too high when I saw him last. I see him again in November so I'm hoping the Ursofalk that I'm taking will have lowered my levels some more. I will need to travel to the UK for surgery (which I'm dreading after my previous experiences with the NHS hospital I was in), but this is a different hospital so fingers crossed it'll be a much better experience.
Other than that I am well and looking forward to 3 whole weeks in Florida starting this coming Sunday!
There's 7 of us going, all adults and all big kids at heart so we'll be doing all the theme parks. Can't wait! Any tips from you guys with ostomies down in Florida for keeping a wafer on in that sort of humidity? I shall be taking enough supplies to change every day if I need to but usually go 3 to 4 days between full kit changes so any help would be appreciated.
Thanks again for all your kind words. Hugs to you all.
Shell
Sorry I haven't been around much. I do lurk from time to time but it has been a while. Jill let me know you were asking after me. Hope you are all doing well.
I'm doing pretty good at the moment. My PSC is in the early stages so not too much damage so far and no real symptoms apart from the occasional URQ pain. The problem that bothers me the most is my hiatal hernia. My GI said he wouldn't refer me for surgery until my liver enzymes have come down some more. They were still way too high when I saw him last. I see him again in November so I'm hoping the Ursofalk that I'm taking will have lowered my levels some more. I will need to travel to the UK for surgery (which I'm dreading after my previous experiences with the NHS hospital I was in), but this is a different hospital so fingers crossed it'll be a much better experience.
Other than that I am well and looking forward to 3 whole weeks in Florida starting this coming Sunday!
There's 7 of us going, all adults and all big kids at heart so we'll be doing all the theme parks. Can't wait! Any tips from you guys with ostomies down in Florida for keeping a wafer on in that sort of humidity? I shall be taking enough supplies to change every day if I need to but usually go 3 to 4 days between full kit changes so any help would be appreciated. Thanks again for all your kind words. Hugs to you all.
Shell
Hi Shell! I used Coloplast's new extra barriers - don't have the box so don't remember the name. They are half moon shaped. THey work well, but hurt a little to pull off, so when you get ready to remove them just put some heat on them (hot compress) for a minute or so. I only use them if I'm in high humidity or swimming a lot...
Thanks Jill....and Shell..so good to hear you are holding your own. Have a great trip to Florida and enjoy all it has to offer. Thanks for checking in, and do so more often!
PS - you one of the first to welcome me here when I first underwent surgery! and provided many great tips with the ostomy. I'll never forget your kindness.
nys
PS - you one of the first to welcome me here when I first underwent surgery! and provided many great tips with the ostomy. I'll never forget your kindness.
nys
also shell look at sure seals. I find them better than the coloplast brava strips, because like jill said.. those brava strips are a downright painful mess to get off. Sure seals work great for me. I also know several others who swear by them who live in FL and swim a lot.
I was just in FL a few months ago.. and I did change a day or so sooner than usual, but other than that.. no problems. Enjoy your vaca.
I was just in FL a few months ago.. and I did change a day or so sooner than usual, but other than that.. no problems. Enjoy your vaca.
I missed you, Shell! Glad to hear from you!
Thanks guys! What a great reception! I know, I've been really lax about coming online lately. I'll try to log on a little more often.
Jill, my problem is I have to cut the white tape off my wafers (Convatec moldables) because I developed an allergy to it so they don't last as long as they used to. I've tried picture framing them with different products including those half moon shaped things from Coloplast (I can't remember the name either) along with various other products, but they all gave me a rash. These wafers were my last resort when everything else gave me an allergic reaction and I'd been using them for around 6 years when I developed the allergy to the tape. Even so, I still normally get around 3 to 4 days out of a wafer. However, we've recently had some very hot humid weather here so I've had a bit of an idea of what it's going to be like. I was having to change at least every other day.
My rule of thumb when travelling is to take twice as much as I think I'll need so I'll be taking enough supplies to be able to change at least every day and a few spare x 2. I use an antiperspirant deodorant under where my bag sits and also have some cloth backs that I made to sit between the bag and my skin to help with the perspiration problem. I'm not really worried about having to change every day as I've done a lot of travelling and had to change in some "interesting" places to say the least. I just wondered what sort of problems any of you encountered when spending prolonged periods of time in that sort of humidity and in and out of the water (water parks etc)?
Anyway, I promise not to be such a stranger in future. Thanks again guys.
Shell
I know, I've been really lax about coming online lately. I'll try to log on a little more often. Jill, my problem is I have to cut the white tape off my wafers (Convatec moldables) because I developed an allergy to it so they don't last as long as they used to. I've tried picture framing them with different products including those half moon shaped things from Coloplast (I can't remember the name either) along with various other products, but they all gave me a rash. These wafers were my last resort when everything else gave me an allergic reaction and I'd been using them for around 6 years when I developed the allergy to the tape. Even so, I still normally get around 3 to 4 days out of a wafer. However, we've recently had some very hot humid weather here so I've had a bit of an idea of what it's going to be like. I was having to change at least every other day.
My rule of thumb when travelling is to take twice as much as I think I'll need so I'll be taking enough supplies to be able to change at least every day and a few spare x 2. I use an antiperspirant deodorant under where my bag sits and also have some cloth backs that I made to sit between the bag and my skin to help with the perspiration problem. I'm not really worried about having to change every day as I've done a lot of travelling and had to change in some "interesting" places to say the least. I just wondered what sort of problems any of you encountered when spending prolonged periods of time in that sort of humidity and in and out of the water (water parks etc)?
Anyway, I promise not to be such a stranger in future. Thanks again guys.
Shell