Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Gi Discussion


  • Please log in to reply
5 replies to this topic

#1 CFMBabs

CFMBabs

    Silver Member

  • Bloggers
  • PipPipPipPip
  • 180 posts
  • Location:England

Posted 09 October 2007 - 03:29 AM

I haven't been on the messagboard much partly due to contributing my time to writing blogs and having just gone through a very emotional time with the death of my mother.

I feel this issue needs discussion in all areas. I'm suffering with a very bad experience with reflux surgery but I don't want to be mis- interpretated by saying that. My experience was, and to a degree is, my own personal experience. There were many factors that contributed to the effects surgery had upon me at that time. My present state is quite healthy but scary for some none- the- less!
Given that the surgery was to improve my reflux, it certainly did just that! The problem I had was deeper in that I had very little motility beforehand. I could have blamed the surgeon for not doing his homework but there was confusion at the time, and if I look back much of the responsibilty was my own.
It's true that I can no longer eat a proper meal but that was something I had problems with anyway. I can honestly say that if I had not had the surgery -- I may still have ended up with a feeding tube.
Following the bouts of surgery I was asked if I regretted my decision of ever going through with it. I can catagoricaly state that at no time did I ever regret any decision I made regarding the procedure. I know of many people who have had this surgery performed and believe me 2 years in hospital I came across plenty, who all said that it had improved their life from their point of view. Some people I met also had scleroderma and I currently know of one other person with sclero who is waivering on whether or not she should go through with it.
I think it varies on how many questions you ask? How well the surgeon understands your condition? and, how much you understand your own condition?
If you are true to yourself -- do you think it will help? I was kidding myself into thinking that my swallowing problems would go away if I could only get rid of the acid reflux. What happened in truth was, my swallowing was so poor to begin with -- the wrap just made it worse!
Whatever decision is made. This is a marvellous procedure and available to those who need it most. I would not hesitate to go through it all again and indeed may have to shortly.
My wrap was taken down a testament to knowing that it can be undone. Now I have the acid back and no control over my stomach contents. At night I choke if I lie too low with some very frightening experiences. I can't swallow anyway so if they put the wrap back it won't give me the problems I had 2 years ago -- I already have means to nutrition.
Let's give this area some discussion and then we can all see the whole picture.

Best wishes and aplogies fo my absence

Love to all
Barbs xxx

#2 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 09 October 2007 - 05:55 AM

Though I'm not having the GI problems others seem to be experiencing... I'm so glad to see that you posted this thread, Barb. No doubt it will help in making the decision whether.. or not... to procede.

As for your absence... I missed your posting/threads so much that I was thinking about you before I even had my cup of coffee this morning! I had you in my thoughts because I wondered, not only how you were feeling, but yes... how you were doing. I'm keeping you in my thoughts... as you can see and hope the days ahead are a bit easier for you.

Soft Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#3 CFMBabs

CFMBabs

    Silver Member

  • Topic Starter
  • Bloggers
  • PipPipPipPip
  • 180 posts
  • Location:England

Posted 09 October 2007 - 06:57 AM

Hi Susie

It's really nice to be remembered and thank you for saying so! As I said the last few months have been very emotional for us all. I'm an only daughter with no other siblings and my father has taken the whole thing really badly. I bring him to my home each day so he won't be on his own for very long. He's 78 going on 7, if you know what I mean?

It's nice to see all you guys are still around, and I mean that in the nicest possible way, not as in deceased -- Oh Y'know what I mean! I've been extremely scarce and although I've been busy working on my blogs, I've had other interests to pursue as well. The most bizarre one of all is my radio spot on thurs morning. Only I, could present a cookery show when I can't eat myself. They don't know this of course and I dread the day they ask me to eat my concoctions live on air.
" This is beautiful, ahhhh, cough cough, heave" Do you think my listeners would ever trust my food ever again? Seriously though, it keeps me out of trouble for a short while.
Must dash -- got the phone ringing it's head off downstairs!

Best wishes
Barbs xxxx

#4 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 09 October 2007 - 07:48 AM

Hello Barbara

I'm new to this site having only been diagnosed in July this year. It sounds very scary reading about your problems, I have just begun to have problems with reflux & so hoping the medication will stop it from going any worse & having alittle trouble with swallowing some foods - they seem to get stuck.

I thought I'd make myself known to you because originally I'm from Lancashire but after many moves now living in Lincolnshire. I still have family living near Bolton.

Hope things settle a bit now for you & having to look after elderly parents is not easy - thats why hubby & I moved but dad died 2 years ago & now we are looking after mum - she's 81 and getting very frail but has a good sense of humour!

Take care

Jensue

#5 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 09 October 2007 - 08:44 AM

Barb, thank you for responding to my post... though we're in different parts of the world we are family :rolleyes:

I sure understand what you are saying about your dad... our uncle lost his wife in February... he too, is 78 and it sounds as though he's going through the same as your dad. I can imagine how difficult it must be for them... when folks get older, have spent so many years together... to be without their significant other has got to be devastating. One of the things he speaks of is feeling so alone... he can be surrounded by other loved ones, but to lose as he and your dad did... they've lost one who was a constant "security", let's say. Regardless, it's so good that you're keeping him close. We just talked to our uncle and he's been put on anti-anxiety meds, which he feels seem to be helping.

As for your cookery show... I think it's awesome that you are doing that... you are something else :D It's so good you're keeping busy with everything that you do... your blogs and Thursday morning radio show, blogging, to name only a few.

I have a couple of questions: 1) Were you and hubby able to get your home done?
Amid all that's been going on, I was just curious.

2) Are you and hubby going to be able to go back to Ireland any time soon? I know it's not easy to get away, when one has other commitments, but I hope you are able to manage some time for a "get-away" of some kind.... maybe a cyber-trip for all of us... to "the islands... again... remember the "Bahama Mamas"? I sure do :lol:

Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#6 CFMBabs

CFMBabs

    Silver Member

  • Topic Starter
  • Bloggers
  • PipPipPipPip
  • 180 posts
  • Location:England

Posted 09 October 2007 - 08:19 PM

Well a couple of answers for you.
Jensue! I live near Chorley and I know Bolton really well. We lived in Wigan for a number of years until we inherited the family farm. I lived on the farm from an early age and currently we are renovating the place -- Which kind of brings me to susie's question. The answer to this is -- were still renovating! The British summer this year has probably been the worst on record, with floods and torrential rain almost every day. We had plans to re-build an old part of the house which in truth we tried to get out of doing originally. We thought it would be okay but the damp came through as it's a solid wall -- they built them like that in the 1600's. We need to take it down and rebuild it with a cavity, if you know what I mean?

I think anyone who has sclero will have some kind of esophageal involvement but not everyone is the same. I know lot's of people on account of attending a support group and a specialist centre, there are currently none of those guys with a feeding tube although most do have problems swallowing. I think I scare them all with my problems but I really am a "one off" So please don't be alarmed at my story
Another busy day! Festive fare -- preparation of! Making cakes and a fruit pudding. Must go my whirlwind day is about to begin

Hugs to all
Barbs xx