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Posted 7/21/2014 3:06 PM (GMT 0)
Hi all,
So with my ongoing loop probs, I've decided to give the Friars a go. Is this the stuff used for colds and comes as a liquid? I had previously been under the impression it would be a paste/cream, like Tiger Balm.
Posted 7/21/2014 3:56 PM (GMT 0)
It is a liquid, it's brown and sticky...if you get the right one. There are two different kinds. I am not at home right now so can't give you the info. Perhaps someone like Polish Dan will be along to give you the differences. It's truly the only thing I use.
Posted 7/21/2014 4:05 PM (GMT 0)
Thanks for that, I've ordered some online, as apparently, it's almost impossible to get in the UK high street. At least I know how to check the contents of the bottle, and it was less than four pounds anyway.
Posted 7/21/2014 6:16 PM (GMT 0)
You will be able to tell if it's the right one if you put some on your arm with a qtip or swab and let it dry. It should NOT wash off with water. The only thing that will take it off is alcohol. There is no residue left when I take my wafer off.....it's bizarre. My skin has never had redness since I have started using it. I wish you the very best and hope it works for you.
Posted 7/21/2014 11:36 PM (GMT 0)
Never used it myself, just wanted to second the wishes that it works and gives you some relief.
Posted 7/22/2014 2:02 AM (GMT 0)
If it cost less than £4, then I don't think you got the same thing that Dan and Larasmom use. Combined with an insane markup for postage, it's more like £30 for a titchy bottle :-/

Here's an example on Ebay. It's a terrible photo: you can't read the label and you can't zoom in, but I think Geritrex is one of the brands approved as the real deal.

www.ebay.co.uk/itm/Geritrex-Benzoin-Compound-Tincture-for-Skin-Protectant-1-oz-3-PACK-/281082295853?_trksid=p2054897.l4275

I've still got a couple of swabsticks left from the sample Larasmom kindly sent to me; if you like, I'll send them to you, so you can try before you buy.
Posted 7/22/2014 9:00 PM (GMT 0)
Thanks for the kind offer NOCT (sure I've seen your name here, but can't remember it!). I'll see what comes back from "the big river" site and let you know.
Posted 7/22/2014 10:48 PM (GMT 0)
I'm the one who wanted a j-pouch but can't have one... :-/

Okay.
Posted 7/22/2014 11:08 PM (GMT 0)
No, I meant your real name. Seems rude calling people by their screen name if you know their real one. I know all about your j-pouch woes. To be honest, if I knew how bad this was going to be, I would have stuck with my end ileo, I really miss that little guy now!
There's stuff I thought I was going to do between step 2 and 3, and could easily have done with my end ileo. Every day with this thing is a day wasted.
Posted 7/22/2014 11:30 PM (GMT 0)
Oh right! My real name is Miranda. Thought you'd forgotten who I was entirely; feel a tad more loved now :p

I think people really do forget how hard surgery is on the body :/ Or maybe some people don't forget, but don't like to emphasise the downsides in case it puts other people off surgery. An otherwise healthy 20-something can spring back relatively quickly; for older people it's a harder journey. If I were to start the j-pouch process; that is, steps 2 and 3, I'd give myself a year for recovery. At least.

So try to have some patience with yourself, and don't expect to be kayaking just yet. Hopefully in a year from now, it will all have been worth it.

Edit: It occurred to me this morning that I never asked what your name was... >.>

Post Edited (NiceCupOfTea) : 7/23/2014 6:55:31 AM (GMT-6)

Posted 7/24/2014 5:01 PM (GMT 0)
Miranda, my name is Ian, and at 43 I'm definitely not springing back like a twenty something! I haven't forgotten who you are, I just don't post a lot in your threads, as I don't know what to say really.
Each individual has different feelings, and these surgeries give people a unique set of circumstances, just like the diseases that put us here.
I can say that I could have lived out my life with the ostomy, and that it wasn't a big deal, but that won't change how you feel, and I don't know what you go through, despite having had the same op.
You aren't missing any fun by not going through step 2 , I can promise you that! However, it must be hard not to have the choice, and you have my sympathy for that.
I agonised over doing this in the end, as you know, but I appreciate the fact the choice was available to me.
All I can really say is, try not to let it define you as a person, as there's far more to every one of us.
Posted 7/25/2014 4:40 AM (GMT 0)
Yes, I understand Friars can be tough to get in the UK. The other one is from Geratrix. It is the same compound ingredients and works the same. It is available on line at www.drugsdepot.com . Search product C2540383. Shipping might be expensive but it is worth it. It comes in a bottle to apply with a q-tip and lasts a loooong time. I have a many-year supply.. NEVER had a leak since I started using it about 6 years ago.
Larasmom summed it up a while ago, something like....they can have my Friar's when they pry it from my cold dead fingers.
Dan
Posted 7/25/2014 4:44 PM (GMT 0)
I had a go with the stuff I got from Amazon today, but the stoma, as usual, was pooping while changing.
This seems to be my biggest problem, I have NEVER done a change without it going. Sometimes it's slow and thick, but a lot of time it's cascading battery acid. Some changes take an hour +.
For this reason, I think I'll refrain from laying out too much cash, as it's unlikely to get applied much.
Think I'll have to eat my words and return to a stoma nurse, as the excoriation is spreading again. VERY sore :(
Posted 7/25/2014 5:29 PM (GMT 0)
Have you tried eating peanut butter or marshmellows about an hour before changing? It can help slow the output down before changing. I'd also try to schedule it around when you take your medicine (like an hour after your medicine).

I ended up with an infection in my skin near the stoma site after my Loop because it was pumping out so much stool. The nurse referred to it as warting or blistering, they had to treat it with silver nitrate but it didn't hurt.
Posted 7/25/2014 7:04 PM (GMT 0)
I keep meaning to get some marshmallows, although they didn't stop my end ileo's output. By medicine, I assume you mean loperamide/codeine? Don't have any left and given them up as a bad job.
As for the timing of things, a lot of my changes are unscheduled, due to leaks or unbearable burning of the skin under the wafer.
It's only been 5 1/2 weeks, but the discomfort and trouble this thing has given me already, is about 10,000 per cent more than my end ileo did in 3 1/2 years!
I'm seeing my doc on Tuesday, going to ask for Cholestyramine, Lomotil and Opium tincture (Laudanum). I'm doubtful if he'll prescribe Laudanum, but it's worth asking.
My Gastrograffin scan is on the 13th August, so all being well, it's another step towards takedown and loop ileo begone!
Posted 7/25/2014 7:15 PM (GMT 0)
Sorry, you're saying you stopped taking loperamide because you felt it wasn't doing anything...?

I would start it up again. Loperamide takes a few days to reach full potency, is dirt cheap, and it has virtually no side effects. If it was doing even a little it's better to take it than not. I know NHS is different but if I wasn't already taking the max dosage of loperamide there was no way I would get a rx for tincture of opium.

My approach to changes with my loop was to take two loperamide tablets and eat six marshmallows about 20 minutes before change time. It worked often but not always. However, I also took six loperamide every day without fail, and that really did improve things when I stuck with it.
Posted 7/25/2014 8:00 PM (GMT 0)

Silent Lucidity said...

I'm seeing my doc on Tuesday, going to ask for Cholestyramine, Lomotil and Opium tincture (Laudanum). I'm doubtful if he'll prescribe Laudanum, but it's worth asking.

Some doctors won't prescribe Tincture of Opium; my GI said that he'd prescribe it if my surgeon didn't want to prescribe it. So if you get rejected then you may want to ask another Doctor and see if the Ostomy can recommend a doctor who will prescribe it (or get you a script) if that is what you want.

I took loperimide, lomotil and tincture of opium together. Max dosages except for the tincture of opium. This did help me with my high-output but it never got me close to the easy and consistent output of the end-ileo.
Posted 7/25/2014 8:10 PM (GMT 0)
about the tincture of opium, I was supposed to take it every 6 hours but it made me groggy so once I went back to work I'd only take it after work and before bed.

The taste of it was horrible, you need to mix it with something to hide the taste of it.....brutal stuff.
Posted 7/25/2014 9:50 PM (GMT 0)
Liz, I can assure you that Loperamide is useless to me. I was taking anything from 6-12 a day, every day, for two weeks. Didn't do a thing for me. Your input is always welcome but trust me, I'm not missing any help by not taking it.
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