Paul's Story

In July 2002 after several months of chronic sinus problems that began with the worst hayfever of my life, I lost my sense of taste and smell, then my appetite, then reached the point where I could neither eat nor drink without vomiting, and was admitted to hospital for emergency treatment. I was diagnosed as having vasculitis (an auto-immune disease that inflames arteries, for which the hayfever is a known trigger) which had damaged my intestines to the point where they had to be almost completely removed along with my spleen and gall bladder. To keep me alive I had to have an ileostomy.

Ten days later I almost died from blood loss due to haemorrhaging from the ileostomy site and my life was saved by running my bed from one end of the hospital to the other, straight into the main operating theatre, in the middle of the night. No idea how much blood they pumped into me. When I became sentient again after days of sleeping and morphine hallucinations I had lost over 50 lbs in weight (because my stomach was being given a rest and I was living on IV drips) and had to be given regular physiotherapy and learn to walk all over again. After 50 days in the hospital I was able to stand on my feet without support but a feather could knock me over. I can walk now but I can't hop, skip, or jump, and I can't climb stairs two at a time any more.

The ileostomy was the least of my worries and I sort of got used to it while I was too ill to be upset by it. I have been recovering since I came out of hospital in September 2002, but with further hospitalisations for blood transfusions, a blood clot, and the diagnosis of a fistula that needs to be fixed before they can reverse my ileostomy, so I have plenty of surgery lined up for the first half of this year.

My baggie seals so well to my skin that I dread each time I have to remove it, which I have cut down to once every 4 days. The only leaks I had were when the nurses changed the bag. I am pretty much of a perfectionist and have the patience to get the bag changes right. But it helps to use the right kind. I use a Coloplast Assura bag of the transparent kind (so I can see what I am doing when I position the flange over the stoma, though the sight of the yukky stuff in the bag sometimes puts me off my food). I use Orahesive powder to treat weepy skin around the stoma, without which the weepy skin undid the adhesive and caused leakage.

I have had periods of several days of fairly good mushy output. Great. But then for no apparent reason I mostly go thru days of high levels of liquid output with frequent bag-emptying. Makes it hard to go out, eg to the cinema, or social events. I am still recovering my strength so I am not back at work yet (off for over 9 months but it ain't been no holiday). As a rough guess, for every mL that goes to my bladder, about 2 go out thru the stoma, so it fills a lot. The bag dominates each day. On the plus side, it saved my life, and I need to live, for my childrens' sake. Their mother died of renal cancer in 2001.

What kept me going through it all was the support of friends and family. I have three teenage boys and they had to learn to look after themselves at home while sparing the time to visit me every day for a total of about three months of hospitalisation while continuing to put a lot of effort into their school work. I am immensely proud of the way they came through it all, and I worked on my recovery, especially the hard work of learning to walk again, basically because of them. There were days when I was inundated with visitors, especially from my friends in the Baha'i religious community of which I am a member. Someone even arranged for prayers to be said at the Baha'i World Centre on Mount Carmel in Haifa, Israel, on my behalf. I treasured visiting time every day, though sometimes I was so weak I would sleep or drowse through it.

I don't have much left inside to connect back to, but the surgeon says he will do the ileostomy reversal, and that I can expect a marginal improvement in convenience over emptying the bag, though I will have to contend with diarrhoea in the early days, which I hope will eventually settle down. I realise it is no perfect solution but my consultant has encouraged me to think that I will be better after the reversal.

I have a few months to think about it because the fistula repair (a leak between bladder and bowel leading to recurrent bacterial infections) and an endoscopy to check on the condition of my stomach have to come first.

I am interested in opinions on the reversal, and on long-term life with a bag. Like I said, I hate the bag changes, and the thing dominates my days and nights, but I want reasonable confidence that the reversal will be a better option. I need to be able to go back to work and incontinence is not going to help.

Paul

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