Hi, been reading this forum now for about 4 months on suggestion by my Gastro, but I have not come across anything like I have on here. I will give you a run down of my issues.
12 years ago I had a chronic case of H.Pylori that was misdiagnosed for nearly 4 months as just a "stomach bug" . I didn't have constipation, nor did I have diahorrea I just kept going to the toilet (fully formed normal faeces) up to 15 times a day and chronic vomiting and swelling in my upper abdomen, I was also piling on weight like nobodies business. I was referred to hospital where I was given a colonoscopy and endoscopy the results showed nothing significant but I did have rips and tears in my aesophagus, a hiatus hernia and a small patch of diseased intestine to to the H.Pylori. I was under doctors orders for nearly 4 years taking several types of medication until it slowed right down to being managable, but not cured as such.
I had an 18 month period of wellness (being able to manage it that is) lost the 5 stone I'd put on and began to get my life back on track. Then one night in 2008 I was taken unwell... and the problems I had before all started flooding back again. I tested negative for H.Pylori this time and my G.P put me back on the medication I was previously on with a view to being sent back to the hospital, unfortunately that G.P left the practice and I was lumbered with another G.P who couldn't care less and it ended up in me making a complaint about her to get me a referral to hospital after nearly a year of trying to get her to do that for me and me getting sicker before her eyes and again piling on the weight for no apparent reason.
I saw a Gastro who at first sympathised with my predicament, we went through everything step by step and what could have triggered the issue and said I was under the "IBS umbrella" but on a very exaggerated scale. I was sent to a top clinical psychologist to see if that would help, I was under her for nearly 2 years, but it got to the point where she couldn't do anything else for me as nothing was changing and discharged me. So back to the Gastro I went and was asked to try the FODMAPS diet with the dietician at the hospital which unfortunately had no effect on me whatsoever after trying it for 8 weeks, so I was discharged from her too.
Again back to Gastro who said there was a treatment that was in its early stages called a faecal transplant and he would consider taking me on to do it as long I was happy to be a test case for the hospital, of course I agreed and he said he would need to talk to the psychologist to see if I was ready for it and would probably have to go for the colon/endocopy again as routine. 6 months later I go back to him and the idea was completely dismissed by him, told me to join the IBS network and this forum and lose weight! (this time I have put on 9 stone!)
I am going back to him on Tuesday for my 6 month review and I am terrified he is just going to brush me off again, my current G.P has tried to contact him twice in the last 6 months as he is concerned about the infection levels in my blood tests as they have been steadily rising over the last 4 years for no apparent reason.... Gastro has not got back to him at all.
So in summary, these are my issues.
Fully formed faeces up to 15 times on a bad day, 5 times average.
No constipation, no diahorrea, no pain, no urgency.
Severe swelling of upper abdomen to the point it feels like I am being squeezed to death.
Vomiting (or regurgitating) food and stomach acid, I have lost all the upper left hand side teeth due to the acid killing and rotting teeth, I have also lost two more on either lower side
Tremendous weight gain.
Fodmaps didn't work:
I am NOT allergic to Gluten, Diary, Lactose, Sucrose, Wheat (been blood, urine and stool tested) I also came back as negative for Celiac.
I have no trigger foods, sometimes a glass of water makes me balloon.
Other medical issues that have been brought on by weight gain and deficiencies caused by my problem.
Thanks for reading and if anyone has any suggestions, they would be gratefully received and also anything I can ask the Gastro that may be of help.