Hi
I am new to the site and as I regularly read the posts I thought that perhaps its time I register and tell my story. Perhaps someone is going through the same and can shed some light as I have kinda lost faith in all my doctors. I hope that sharing my story may lead to some answers.
I am a 49 year old white female. I have always been very active, gyming and running everyday, conscious of my body and overall took good care of myself. I don't smoke and consume minimal alcohol.
In late 2010 I started suffering from severe constipation and after numerous hospital admissions/scans/scopes/xrays etc and jump to Nov 2011 it was decided that I needed to have my colon removed. Apart from giving birth in 1989 and having a hysterectomy in 2003 I had never been back to a hospital! I had a total colectomy via
open surgery and was 10 days in hospital. I recovered pretty well and besides having a 30cm cut down my stomach I didn't lose any weight or have any significant side effects from the surgery. The surgeon did a direct join of cecum to rectum so I don't have a bag. I was on Imodium daily for the loose stools but they were manageable and I went about
my daily life as normal. Then in April 2012 the incision popped and I had further surgery to repair an incisional hernia. I suffered terribly from there on with acid reflux and was on nexium 40mg 3 x daily. I continued to have problems with the reflux and on a number of occasions was admitted to hospital due to pain. I underwent numerous scopes and along the way picked up H.Pylori, more meds were prescribed and off I went. I was still having loose stools and now on top of that I was permanently nauseus and bloated. My stomach used to swell so badly that I looked pregnant. I was in severe pain due to the swelling. My weight had still not fluctuated. I was on average around 63kg of slender build.
My GP suspected that I had an obstruction and did xrays. He referred me to a surgeon whom I knew well as he had performed scopes in the past. I was readmitted and he tried to perform a colonoscopy but the scope wouldn't go in!! A barium enima was done after theatre and showed a very thin loopy small bowel. He said there was no obstruction and sent me home
This is when I decided to take matters into my own hands and looked for another doctor that perhaps knew what he was doing. I met with a new surgeon at a neighbouring hospital who immediate set about
doing all sorts of tests. I did a lactose intolerant test and was found to be highly intolerant, so no more dairy. He did a scope to see why I was on such a high dose of nexium and for such a long period of time and discovered that I had Barretts Esophegus. So the dairy was causing diahorrea and the nexium was causing diahorrea so I stopped the meds and cut the dairy. He then performed a Nissen Fundoplication for the reflux and I felt great. No more heartburn and no more throwing up undigested food. All in all I thought I was on my way to being my old self. Now we are at August 2013 and this was my 22nd hospital admission since my total colectomy. I honestly thought this was the last of it. I went overseas on holiday which was a bit of a challenge as I wasn't able to eat much after the surgery but I coped and came back well rested. My tummy was still swelling and was still painful and on 21 Nov 2013 I ended up back in hospital with an intestinal obstruction in 4 places. I was in critical care for a week after having 20cm removed of small bowel, in 4 separate sections. The surgeon also removed numerous adhesions from the previous surgery. My belly had again been cut from top to bottom along the old incision
.
Jump to today Feb 2014 and I feel like I am back at square one. I have BM up to 20 times a day, yellow foamy and burn like hell.... sometime oily and mostly explosive. My belly is sore midway on the incision and it looks like I have yet again popped the hernia in the same place. I have recently had blood test for celiac disease which came back negative so I opted to have the bowel biopsy and that too was negative! I tried to cut the gluten out of my diet to see it that helps but that was a waste of time too. Every single night after I eat I have these severe attacks which feel like I am inhaling shards of glass, the attacks can last up to a couple of hours and nothing I do helps. I am really at my wits end as I have lost almost 12kg since November, I am permantely tired, I have intermittent pains in my right rib cage. I am fed up going back and forward to the doctor and reading on the internet to see if I can self diagnose.....
has anyone got any idea or experienced anything similar.....