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Old 07-12-2010, 03:11 PM   #1
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Harrybrad HB User
I had an illiostomy following Crohns.

New on this site had a illiostomy following Crohns,aftercare from hospital leaves a lot to be desired,had to learn most things about looking after myself by hit and miss,had lots of problems my stoma nurse does not seem to be very interested,i could write pages about my experiences,and will when i get used to this.I have found out some treatment for dealing with fast output stomas which may help others,and i will detail this and my problems when i can,and hope i can help others,time here now 10.06.p.m but i hope to be back tomorrow to see any messages.
Harry.

 
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Old 07-13-2010, 10:27 AM   #2
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Re: I had an illiostomy following Crohns.

I just want to wish you good healing and a happy future. Thank you for posting when you have time; I am sure it will be very helpful to people.
I think you should request a different nurse, and tell them why you aren't happy with your current nurse. You deserve a kind and caring support system.

 
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Old 07-13-2010, 02:04 PM   #3
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Harrybrad HB User
Re: I had an illiostomy following Crohns.

Dear Peaceful Earth,
i did complain to the health authority and asked to change my nurse,but was tsawold that her junior already had a full case load and nobody else was available,eventually having no other option i met her to clear the air at my local doctors at which she promised things would improve.I next met her when i had a routine appointment with the consultant who did my Illiostomy were she promised to moniter me regularly,that was six weeks ago since then i,ve had no contact with her,i,ve a lot of complications which i now i have to resolve myself,it,s as though they have washed their hands of me.
Whilst in hospital i met another patient who saw her and asked me later if she was going to be my stoma nurse,to which i replied yes,and he said god help you i had her and had to get her off my case as she shows a total lack of interest,the trouble is she as ingratuated herself with the consultants and senior management who think she,s the best thing since sliced bread.
The trouble is now i have nowere else to go and am trapped,i think her philosopy is what can i do to make my life easier for myself,her patients don,t count all she wants is a easy life for herself,meanwhile her patients suffer,i will take it much farther soon if things dont improve,but i,ll be branded a troublmaker,and when push comes to shove who will they believe,well got to go for now maybe later i,ll tell people what impact a fast output stoma can cause in all aspects of your life,it,s nothing like is shown in the literature.

Goodnight.

Harry

 
Old 07-14-2010, 06:04 AM   #4
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penny70 HB User
Re: I had an illiostomy following Crohns.

Hi Harry,
Just a quick thought about your fast output stoma. I've heard marshmellows and imodium can slow things down. I had one when I had a fistula and remember things being very fluidy almost always. Had to change my brand of bag at least once, convex instead of concave or vice versa improved things a lot. I'm sorry you've had to suffer with an uncaring nurse. I say keep complaining, in writing and to higher ups. I did the same with my first MD. Hopefully, the squeaky wheel will get the different RN.
PEnny

 
Old 07-14-2010, 01:57 PM   #5
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Harrybrad HB User
Re: I had an illiostomy following Crohns.

High Penny,
if you look on Google under Illiostomies you will find a article titled Lopermide in the treatment of high output stomas,i was told off when i told my nurse i was taking a higher dose but she told me that 8 capsules a day was the maximum,but under this article three university hospitals were using much higher doses,as high as 64 with some success.Myself increasing my dose to 4 2mg capsules every 2 hours (in waking hours)as slowed it down a lot and made life a lot easier and i,m sure could help thousands of others if only they knew.
In my case it,s unfortuanate that i had to research this myself a good specialist nurse should keep abreast of current treatments and research for the benifit of patients,mine seemed to object to me trying to solve my own problems,and i found out did not pass on my printout on Lopermide treatment to my consultant,i think it,s a case of dont want to learn and simply does not care.
I do hope people read this because it could help so many people with high output stomas.I will try and get this out to a wider audience as theres nothing to lose,i,ve had no side effects so far,luckily my g.p.lets me have as many prescriptions as i want,but you can get Lopermide on line if you wish to.Good of you to reply,all my best hope you are doing o.k.

Harry.

 
Old 08-02-2010, 01:00 PM   #6
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Graham1961 HB User
Re: I had an illiostomy following Crohns.

Quote:
Originally Posted by Harrybrad View Post
New on this site had a illiostomy following Crohns,aftercare from hospital leaves a lot to be desired,had to learn most things about looking after myself by hit and miss,had lots of problems my stoma nurse does not seem to be very interested,i could write pages about my experiences,and will when i get used to this.I have found out some treatment for dealing with fast output stomas which may help others,and i will detail this and my problems when i can,and hope i can help others,time here now 10.06.p.m but i hope to be back tomorrow to see any messages.
Harry.
Hi Harry

I had a fast Stoma Harry , while in Hospital while learning to eat again the Bag would literally Explode... I was advised eat HIGH protien Foods,Chicken will help [ Like those Drinks they provide in Hospital,]also, Like another Mentioned,Marshmallows, Crisps, Wine Gums will also aid in resolving your Problem...

It was Normal to change My bag , six or more time a Day , let alone Empty it , as the Fluid constantly Leaked onto the Skin -It Took more then several Months for Mine to dry Up , Have Patience .

Last edited by Graham1961; 08-02-2010 at 03:03 PM.

 
Old 08-02-2010, 02:16 PM   #7
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Harrybrad HB User
Re: I had an illiostomy following Crohns.

Thank you very much,it,s good of you to reply,i wish you good luck and health for the future.

Harry.

 
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