Hi I'm Hayley,
I've posted a couple of times but never got round to telling 'My Story' so here goes ...
I'm Hayley , 38 and live in Sunderland , NE England. I am single and work as an Accountanty type person.
I was diagnosed 7 years ago after 3 years of being told I just had a stomach ulcer , IBS etc etc - I started to think I had just become a hypochondriacbut eventually after moving back oop North from the SE of England I saw a new GI who scoped further down and discovered I didnt' have just one stomach ulcer but several hundred of them. In the 3 years of misdiagnosis I'd developed some severe narrowing and needed surgery in the spring of 2004. I was booked in for what was billed as a quite simple routine surgery - a Roux en Y Gastroscopy to bypass the narrowing at the top of the stomach and a right hemicolectomy to remove narrowing further down.
The surgery went ok - I was discharged after about a week but within 3 hours of being home , unfortunately the join at the hemicolectomy failed and I was admitted back to hospital. I had to say goodbye to my family as my chances were very slim due to the rupture and delay getting to hospital (my boyfriend at the time didn't take my requests to ring an ambulance seriously and I slipped into a kind of coma).
Obviously I survived the surgery but woke with an ilestomy pouch which caused great upset as I was completely unprepared for this possibility. My surgeon agreed to resection as soon as possible - it was about 8 weeks until I had the reversal , slightly delayed due to MRSA which I'd caught during surgery number 2. Surgery number 3 was eventful too - I lost all of my blood into the stomach cavity but after several transfusions and days in intensive care I came through that and was released with everything intact and touch wood it's stayed intact since !
I've had two flares since then , last one was last autumn which required a brief stay in hospital mainly to rebalance potassium etc.
I find now that the D is pretty constant - good days I go a couple of times , bad days I can go 40/50 night and day - I think maybe it's just down to the removal of the small bowel. I take Questran if I really need a good day but if I'm close to the toilet I sometimes just let it go as less discomfort (apart from the nappy rash - ouch !) and Questran is disgusting ! . Other meds Omeprazole as I can't absorb the bile produced Iron and Potassium tablets and quarterly B12 injections. Oh and I'm now taking an anti depressant to try and increase energy.
I try not to let it rule my life but like everyone I have pity party days which I think are inevitable - just got to try and remember others are worse off and that I'm lucky to be as fit as I am.
I do really struggle with the exhaustion - do many of you take a vitamin supplement ? My GI just says I have to get used to the exhaustion and reckons a vitamin supplement would be a waste of time ?!? Maybe I need to change my GI
Any advice is appreciated - thanks for allowing me to tell you about my trials and tribulations =D
Hx
I've posted a couple of times but never got round to telling 'My Story' so here goes ...
I'm Hayley , 38 and live in Sunderland , NE England. I am single and work as an Accountanty type person.
I was diagnosed 7 years ago after 3 years of being told I just had a stomach ulcer , IBS etc etc - I started to think I had just become a hypochondriacbut eventually after moving back oop North from the SE of England I saw a new GI who scoped further down and discovered I didnt' have just one stomach ulcer but several hundred of them. In the 3 years of misdiagnosis I'd developed some severe narrowing and needed surgery in the spring of 2004. I was booked in for what was billed as a quite simple routine surgery - a Roux en Y Gastroscopy to bypass the narrowing at the top of the stomach and a right hemicolectomy to remove narrowing further down.
The surgery went ok - I was discharged after about a week but within 3 hours of being home , unfortunately the join at the hemicolectomy failed and I was admitted back to hospital. I had to say goodbye to my family as my chances were very slim due to the rupture and delay getting to hospital (my boyfriend at the time didn't take my requests to ring an ambulance seriously and I slipped into a kind of coma).
Obviously I survived the surgery but woke with an ilestomy pouch which caused great upset as I was completely unprepared for this possibility. My surgeon agreed to resection as soon as possible - it was about 8 weeks until I had the reversal , slightly delayed due to MRSA which I'd caught during surgery number 2. Surgery number 3 was eventful too - I lost all of my blood into the stomach cavity but after several transfusions and days in intensive care I came through that and was released with everything intact and touch wood it's stayed intact since !
I've had two flares since then , last one was last autumn which required a brief stay in hospital mainly to rebalance potassium etc.
I find now that the D is pretty constant - good days I go a couple of times , bad days I can go 40/50 night and day - I think maybe it's just down to the removal of the small bowel. I take Questran if I really need a good day but if I'm close to the toilet I sometimes just let it go as less discomfort (apart from the nappy rash - ouch !) and Questran is disgusting ! . Other meds Omeprazole as I can't absorb the bile produced Iron and Potassium tablets and quarterly B12 injections. Oh and I'm now taking an anti depressant to try and increase energy.
I try not to let it rule my life but like everyone I have pity party days which I think are inevitable - just got to try and remember others are worse off and that I'm lucky to be as fit as I am.
I do really struggle with the exhaustion - do many of you take a vitamin supplement ? My GI just says I have to get used to the exhaustion and reckons a vitamin supplement would be a waste of time ?!? Maybe I need to change my GI
Any advice is appreciated - thanks for allowing me to tell you about my trials and tribulations =D
Hx
