Frustrated by Delays in Medical Procedures

Wow - some news .....

The examination under anesthesia which was due to happen this month has been booked - for bloody September!!!!

In reality, that means that my surgery to get the repair to my fistula done will be next year..... if I survive that long... 13 years is a long time to wait - maybe lucky for some, eh? That glimmer of hope I had at Christmas is fading far into the future once more.

Having a bad day. Broken my record of 6 pouches in one day by 2.... just put on no. 8 - I am red raw and bleeding now, what other load of crap is going to be flung my way? Looking forward to going to bed and being plastered in the night again, will wrap myself in towels to avoid having to sling another duvet in the bin....

I have seriously had enough!

Awww, seems you're going through a real ordeal! I hope the examination goes smoothly and you can soon get this operation done!

Thoughts go to you!

Tim x

Aww, thanks, Tim... a bit better this morning, but I haven't had the courage yet to unpeel the bag and put on No. 9 - but at least I survived the night. It is starting to leak but hasn't yet broken the seal. I can just see it seeping through my flange extensions. Ugh! xxx

I can understand why you feel you've had enough. The phrase "more than enough" comes to mind! I commend you for maintaining your focus all this time and continually striving to find answers and get better (you are probably muttering "what other choice do I have?" But there are other, more negative choices.

I can't imagine the frustration of having to change the pouch so many times. I have never had serious skin problems around the stoma, but my disabled daughter also has an ileostomy and has had episodes when a pouch won't stay on, and once I even moved her back in with us for a week to eliminate a rash that prevented pouch adhesion (she lives in a group home). It took a few days to get her back on track.

You mentioned ostomy nurses once, so I assume you have availed yourself of their advice and assistance when feasible. It is a hard cycle to break as the pouch won't stay on but while t is on it doesn't help the skin and on and on. I hope that is improving for you.

As for those other symptoms, if you lived in the northeast U.S., I would wonder if you have Lyme's disease. It is a regional condition here that is hard to diagnose. In fact I have a friend who was diagnosed with fibromyalgia but it turned out to be Lyme disease. Don't know if they even have cases of it in the UK. (It is caused by deer ticks, so there may be something like it there.) I am sure it is a massive long shot, however.

But I don't pretend to be able to be really helpful to you - you are doing a lot of legwork and medical exploration to get answers, and the best we can hope for is to give you moral support. I certainly hope you are getting enough of that. Keep your chin up and try to be optimistic.

Have you tried soaking it before you remove it? It may ease the pain away.

Tim x

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi Tim - I actually went to a roadshow last week, so I have loads of samples which I am using to ease it off, so that now it is not so bad! I have managed to keep no. 9 on since this morning, so fingers crossed!

Narrator, thank you very much for your support - we do have Lyme in the UK. It is one of the things on my list, along with FMS/CFS/ME/thyroid/scleroderma/lupus, etc. - they all fit to some extent. The strange thing I find is that I NEVER catch a cold - when all around me suffer, I just carry on suffering in my own sweet way, but no sore throats, fevers, chest infections, or stomach bugs for several years now - but always after surgery, my wound gets infected and the antibiotics always give me a candida infection.

I think what I will not be able to take is my GP saying to me that I will feel better once my tum has been sorted out... NO, this is something different, on top of all that... I have known my body for nearly 50 years, I know when it isn't right! But, I just feel like I am whining when I see him and we just don't move on - I have had loads of blood tests but they all come back negative for anything - but I am not normal by any stretch of the imagination. I try to stay positive and sorry I vented at your post earlier, was almost at the end of my very tattered rope!

Take care both, Rach xx
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Well, Rach, that was pretty mild venting and carried no sting, so no apology is necessary. And surely those little x's you left meant no harm! : ) Keep us up to date... Peter.

I will Peter, thank you ........

PS: got a copy of your book the other week - haven't started it as yet (I only ever read at night in bed as find it very uncomfortable to do unless lying down for some reason - so I go to bed, read the last few pages that I read the previous night, because I have forgotton what went on, (plus a couple more pages), then fall asleep with the book and light on .... so don't get through books so quick! But please be assured it is on my pile!)

Also, used to manage a group home - in the days when I could .... just loved that job - 4 clients and a small team of support workers. Had to give it up as my health deteriorated and went to retirement housing management - not so rewarding and too much bureaucracy.... don't miss that one much! Now I have difficulty doing my little garden and I don't even have grass! Ah well ....

Take care, Rach xx

Obviously I hope you enjoy the book. Thank you for your leap in faith to buy it. I don't write dense books, so I trust it will be easier to remember where you left off than some. I try not to read heavy books in bed myself, because when they hit the floor it wakes me up!

I will look forward to your next blog entry and am sending healing thoughts your way so there might be good news in it. I will e-mail once in a while too as I recall you saying you can only reply. Take care!

Sorry to hear you have a fistula. I had one when all my problems started in '08, but it got fixed by another doctor, which took my second ostomy bag. But I had a second reversal and am doing fine, with the help of friends and family. I wish you a speedy recovery when you get it done. You should keep pushing the doctors to get it done sooner... God bless.