Jump to content


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


Photo

update-Gastroparesis, Motility and Methrotraxate


  • Please log in to reply
8 replies to this topic

#1 Sharonvandee

Sharonvandee

    Silver Member

  • Members
  • PipPipPipPip
  • 118 posts
  • Location:Albury Australia

Posted 08 November 2009 - 05:05 PM

Hey

Been a while since I have been on due to computer and health issues.

Last time I updated I had just had a nissen funduplication to fix issues with reflux and aspiration pneumonia. Initially the operation was a success. I was feeling like I had done a good thing. Five months down the track and I have mixed emotions about the operation and this disease. I haven't had a chest infection or pneumonia since the operation which I am so happy about and I am hoping this will help preserve my lungs a little longer. The other positive from the operation has been weight loss which hopefully will help with the strain my body is under. Unfortunately, though, since the operation I can no longer eat and survive on a liquid diet, lots of juices and protein shakes. I can only have half a glass at a time. Even this style of diet leaves me in pain not to mention the regurgitation of whatever doesn't get into the stomach first time round. I am now starting to lose muscle mass as I can no longer eat the dietary elements I need to sustain them. I have seizures and black out from low sugars and with summer now being here I am starting to have issues with dehydration. The Gastro specialist says I have lost most of my motility in the entire gi tract. Hence the severe gastroparesis. I am booked in in the next couple of weeks for dilation, so here's hoping, the only concern is if it is opened too much then I will be back at square one.

I have also been started on Methotrexate and Motilium.

So far no side effect from the methotrexate other than being tired three days a week and bad nausea.

Has anyone else had dilation? Did it help?
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 debz

debz

    Senior Bronze Member

  • Members
  • PipPipPip
  • 38 posts

Posted 08 November 2009 - 07:54 PM

Hi Sharonvandee,

I have just had a dilatation of the esophagus - not sure if that is what you were meaning? I feel as though food is getting stuck and have had dysmotility confirmed with manometry testing. I really feel for you, as GI problems are awful and very hard for family/friends to fully understand. The dilatation itself went smoothly and took a bit longer than an endoscopy. He couldn't dilate it very much as I couldn't fit the adult mouthpiece in my mouth, so they couldn't do a medium stretch and opted for one smaller. To be honest, I haven't noticed a huge difference, but then everyone is different and we all have different results :). I wish you good luck and lots of (((((((((hugs)))))))))). Blacking out because you are not getting enough nutrients isn't fun. Does the doctor know what is going on? Hope that whatever happens re dilatation, that it works for you.

hugs Debz

#3 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 09 November 2009 - 02:30 AM

Hi Sharon ,

I don't have any advice but will keep you in my daily thoughts.

It seems like there would be liquids especially designed to prevent muscle loss, etc., but I don't know anything about that.

Take care, Everyone.

Margaret

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 09 November 2009 - 09:44 AM

Hello Sharon

It's great to hear from you again although I am so sorry you are having such a rough time of it. Can you see a nutrionist, presumably they could make recommendations to enable you to get your intake of sugar and nutrients balanced.

I am on methotrexate and yes it can cause nausea and fatigue, like you don't have those issues aready. It has also caused my hair to thin a lot. I don't have bald patches or anything but it is definately thinner than it was. I understand it comes back once the treatment stops so at least it's not permenant.

I hope this helps and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 09 November 2009 - 10:35 AM

Hi Sharon

Nice to see you post again, welcome back. Sorry, I can't offer any advice either.

I'm so sorry to hear you've been going through such difficulties and I really hope the dilation helps you too! I will keep you in my thoughts as well. Take care and keep us updated.
Sending good wishes your way!

#6 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 09 November 2009 - 10:48 AM

Hi Sharon,

I was really sorry to read that your fundoplication hasn't worked out as well for you as hoped. Although I have had the Nissen fundoplication too, mine hasn't caused any problems in the almost 2 years since it was done, so I can't offer any personal experience in dilation after fundoplication, but I did do a web search on dilation after fundoplication and found the link I've just given you to an article from the USA's National Institutes of Health's library. It seems to indicate a good success rate for dilation after fundoplication.

Will you keep in touch and let us know how the dilation goes and how you are doing?

I wish you all the best,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#7 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 09 November 2009 - 01:14 PM

Hi Sharon,

My husband had a Nissen over five years ago and has had super results from it. It hasn't impaired his ability to eat, at all, and it has completely eliminated heartburn. Really, a Nissen surgery should not impair your ability to eat, but rather improve it since there is no longer acid reflux to deal with. Have you followed up with your surgeon on this? I've heard that sometimes they need to re-do the surgery. In fact, I know at my husband's center they were frequently called upon to re-do the Nissens that were done by other, less experienced, surgeons.

So, I'd suggest that you might want to get a second opinion from a more experienced Nissen surgeon. You might need it fixed. Or, they might be able to pinpoint something else that could help you eat more and better.

Anyway, I'm very sorry for what you're going through. I'm sending lots of extra warm hugs your way! :emoticon-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 susieq40

susieq40

    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 09 November 2009 - 01:56 PM

I had surgery for reflux in 1994. Don't know if that is the same surgery or not...or if they just call it something else. The surgery totally solved the reflux problem. It did however cause me not to be able to eat much, and the wonderful side effect of losing weight. And to this day I can't throw-up what ever goes down stays down. and I don't have reflux problems, which I'm glad for with everything else that is now going on with this disease. I learned to take smaller bites, But also with time I was able to eat more again, so I'm not sure if this was the same procedure, and maybe your doctor could reccommend protein shakes or something to help with the loss of all that. I also agree with others, maybe a second opinion with a doctor that does the procedure more often could be of some help. I'm sorry your going through so much right now. I remember feeling like I was gonna die before I had the reflux surgery, I just felt that bad...little did I know it was part of this disease...I hope all goes well, keep us informed..I wish you the best!

#9 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 10 November 2009 - 04:42 PM

I'm so sorry that you have so many problems to have to handle.
I have nothing to offer with the digestive problems. But can't your doctor do IV's for rehydration? That would at least make you feel so much better.
I hope that your additional sugery gives you relief soon and I'll keep you in my thoughts. Posted Image