I thought I was the only one

I've been experiencing problems swallowing since I had pancreatitis and was in hospital for 4 months. I was having difficulty eating and taking medication when I was discharged end of March 2019, and they linked me with a dietician. Who referred me to the specialist at my local hospital. That was 5 years ago this May.

I was sent for a barium swallow and biopsies. They found the area of constricture about 5 CM really narrowed and full of scar tissue (Barretts).

I had 3 OGD dilations at my local hospital, which only helped for a number of days, then I started being sick again and back on soup.

They admitted they didn't know what to do with me and referred me to the specialist at St Thomas' in London.

What with covid I had abit of an issue getting the first appointment, had to get my local MP involved as I was going out of my mind.

I was booked in, first with a phone appointment then had my first OGD there. I then had a capsule put in at Guys to monitor the acid and pressure. Then last March had acid reflux surgery. OGD dilations continued, had 40 in total.

I was in discomfort for 48 hours after each dilation. Then it would ease and I'd be back to normal. But only able to eat soft foods for 4 days approximately, then it would close I'd be back on soup, then close again be on blended soup, then I'd be booked in again, and it would repeat.

Last November, I had dilation on 10 October, by the 4th November I couldn't even have tomatoe soup by teaspoon, by the 7th Nov it was taking 15 minutes for a sip of water to go down. I was admitted to my local hospital for 5 days on drips, until I could be seen at St Thomas'.

Then 4 stricturotomy's (sliced through scar tissue). Which were so painful after, unbelievably. 2 of them I could eat for a week, and the other 2 just a number of days. So really not worth it from perspective. The amount of pain wasn't comparable to the amount of time I could eat.

I have 3 strictures within the 5 cm stretch of my oesophagus.

Last December I had a stent fitted. For 6 weeks I was in intense pain and unbearably sick. I was on morphine 3/4 times a day, aswell as paracetamol. I had it taken out as an emergency 6 weeks to the day. I had a barium swallow at Guys and it showed that my oesophagus had created a 4th stricture right over the top of the stent and not letting anything down the stent.

I lost 2 stone during that 6 weeks, as I was unable to eat due to the pain and by the end of the 6 weeks I was having trouble drinking aswell.

Now I'm waiting for a face to face appointment with my Consultant. I think I want a peg feeding tube put in. for 5 years now, my life has been on hold. I can't plan a day out as I get so anxious I won't be able to find smooth soup somewhere, I talk myself out of going. My Husband and I haven't had a holiday since the summer of 2018 before I had the pancreatitis.

I can't bear to watch food adverts, my Husband does all his own cooking as I can't bear to be involved. We can't got out to restaurants as I can't just sit there and watch others eat. Christmas day last year (when I had the stent in), my entire family including my Husband were eating at the table and I was sat on my own in the living room.

Is there anyone else please who is experiencing the same/similar?

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