Scleroderma Support Group
Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.
Hello,
I was wondering if anyone here has had the toupet fundoplication? My doc won't do the nissen because I have dysphagia and she said none of my food would make it to my stomach at all.
I have severe GERD and it's ruining my life. I can't eat at normal times and I am on high doses of nexium, which I believe is causing constipation (or it's my scleroderma). I have to take meds to go to the bathroom and can't leave my house.
It would just be encouraging to hear a positive outcome from someone who has had the surgery as well.
How are you doing since posting in July?
I just rejoined Daily Strength. We seem to be living the same nightmare. I see you didn't get a reply to your posting. Must be disappointing.
I have the same extremely frustrating eating problems. I have minor swallowing problems but worse trying to swallow pills and dry food. Even when I eat a small amount of solid food, it sits in my lower esophagus and stomach. My abdomen gets painfully distended until I take Milk of Magnesia. THEN I have to stay home close to the bathroom.
I was diagnosed with Scleroderma in 1996 with a Polymyositis (severe muscle inflammation & weakness) crossover.
What is toupet fundoplication? Did you ever find anyone else that had it done successfully?
All these years I've been hoping to meet others living with systemic type of Scleroderma. Any chance you live in Northern NJ or somewhere in our tri-state area?( NY,NJ,CT).
I look forward to hearing from you.
Julie
I never heard from anyone and I can't find any information on people who have gone through this.
A toupet fundoplication is a partial wrap of your stomach so the acid won't rise back up. Normally someone in my situation could have a full wrap but since my esophagus muscles don't work at all, so it won't push the food down.
I don't live in that area, I got myself stuck in the South. I am a former Northerner looking to return someday.
Mine showed 368 acid episodes in a 24 hr period.
My test showed weak peristalsis the pump that pushes the food through.
Ben told me he only does Toupet as the full wrap as to many complications and the Toupet is early days.
I left hospital after 24 hrs i had shoulder pain which lasted for 6 days i had stomach pain yesterday. It still only day 13 i am on a puree sort food diet which i can tolerate ! I lost 4 kilos from 80 to 76.
Medication never helped me . Since the operation i am still burping especially on waking up with slight nausea i had nausea as my main problem for over 2 years. I have no burning of my throat like before i am off my meds.
I hope you can understand this i am dyslexic if ya need any more advise please aks !
I have to see my surgeon in 4 weeks.
I going to try tape my mouth at night as i feel i swallowing lots air , i also have a lung disease fungus another reason why i had the opp = acid entering my lungs ect best John
I had the surgery on 10/11/18 and I am doing amazingly well. I am completely off my nexium, only taking one zantac per day, which is what my surgeon wanted.
I had a lot of shoulder pain, crepitus and bloat, all of which is gone now. I am able to eat almost everything at this point but I haven't had any carbonation, steak or sushi. I plan on doing that in a couple of weeks.
I would recommend this surgery for anyone who has the same issues, it's been a lifesaver for me.