Mandy's Story

After reading a few of other people's stories it has prompted me to write mine - I expect it will be quite cathartic - I haven't written it down before!

In June 2001, after a life of relative good health and never any tummy problems I suddenly became very constipated. I remember we were at the beach (we live near the coast) after I had not having visited the bathroom that morning - very unusual for me - I was sitting on the beach with the family and had some uncomfortable stomach pains low down. I thought my period was starting and I was unprepared so we all had to go home a bit early. I took some laxatives we had in the cupboard and expected them to work the next day. After 3 days and feeling very uncomfortable after trying fybogel + liquid parafin with no result I went to the doctor. He just told me to drink lots of water and gave me some Lactulose. After 10 days I was in agony and the district nurse came round with an enema. I can't be the only perosn who has actually looked forward to one - can I?

The last time I had had one was before giving birth to my first baby - the old fashioned hot soapy water etc. However she produced a little plastic bottle with a nozzle - very disappointing - and it didn't work. By this time I could hardly walk and couldn't believe how lightly the quacks were taking this - I was in agony. Eventually the laxatives worked but found I had to take them every night and eventually was put on Normax capsules which worked but I had constant pain and awful trapped wind.

I used to wake at 4-5am in awful pain and have to spend 2-3 hours in the bathroom. It was hell for the family - only one toilet - so sometimes I had to go out to the garden shed - It was dreadful.

Eventually in October I was sent for a barium enema - and they diagnosed "mild" diverticulitis, mind you there didn't seem anything mild about it to me! I then had some good days but mostly I was curled up on the sofa groaning. The doctor gave me no advice about diet - useless man - and so I went to see a food nutritionalist. The best money I have ever spent! She advised me to come off all wheat and as much milk products as I could and eat mostly lightly cooked vegetables. It was very hard giving up wheat - you dont realise how much "normal" people eat of it til you have to give it up.

I used to have Shreddies for breakfast, a sandwich for lunch and often something wheaty (pizzas/pies/cous cous etc) for supper. I trudged along through January feeling a bit better until early in Feb this year (2002) I got what I thought was a waterworks infection - severe pain in my lower left side. Was prescribed Antibiotic's but after a week's course I felt worse. Then one morning when I was planning to go to the doctors. I felt so ill and had a high temperature. I suddenly felt hot down below and realised I had passed about a mugful of pus from my front passage. Rang the doctor and he admitted me to hospital straight away. Trouble is when I got there I was not examined by a doctor for 48 hours - can you believe it? - by which time the pus had finished draining and doctor told me it was not pus, but "something left over from my last period". He told me I could not be scanned for 3 days as I was not an emergency and if I went home he would arrange a scan as an oupatient in the next 7 days. I was astounded that he believed neither my doctor ( who had seen the mess I was in) nor me that it was pus.
I was very scared, I have been neglected by doctors twice in the past and have nearly died each time, because I was not believed.

This happened three times - about once a fortnight until after the third time it was discharging constantly. I didn't get the scan for 6 weeks, but there was nothing to see on that scan or another I had about 6 weeks later.

Then in June I had a hysteroscopy and was told there was nothing wrong with my womb. My doctor, by this time, thought I had a fistua on my colon and was frustrated that I was not being taken seriously at the hospital - I had started to see another doctor in the practice - a lady doctor who did take me seriously. Then in July I had the most awful pain one morning and a load of wind started travelling down my back passage and then suddenly burst through my front passage together with faeces. I was terrified!

I was admitted to hospital and was scanned that day and lo and behold there was air in my womb - proof that there was something wrong - and probably that it was a fistula. I was so relieved that at last I was being believed. It was suggested I went home until they could do an MRI scan but I stuck fast and refused. They were not sending me home til I was fixed, not in that state anyway - I could have got peritonitis at any time - did they think I was a COMPLETE IDIOT or what? After 10 days I got the MRI scan and they agreed I had a fistula and needed surgery. Luckily I had had a few ops - 2 C sections and appendix out so I had an idea of what was coming- or so I thought!

My surgeon was wonderful, at least I trusted HIM, he said that they didn't know quite what they would do til they got in there but I may have to have a hysterectomy plus any surgery that was needed on my bowel. He mentioned the slight possibility of a colostomy, but skated over it, so I didn't really take it in - I signed the consent forms and "went down". I was told I would wake up in a high dependancy unit and stay there for a day or two. When I woke I was not in HDU ( they didn't have a spare bed - someone else who was sicker had been admitted while I was on the slab. I was in a nasty grubby little side ward on a different ward to where I had been, with an epidural in my back and MALE nurses. I was horrified to be given such intimate treatment by men. I had never been nursed by men, an although they were ok, it was so embarrassing having them put suppository pain killers in and being washed by them - ugh the thought still makes me heave. I didn't realise til after I was discharged I could have asked to be nursed by women only! The next few days passed in a haze of morphine and terrifying hallucinations. I begged for a cup of tea ( I am usually "very good" after anaesthetics) and no-one told me I wouldn't have even water for days. I was completely freaked out to find I had had a colostomy and was totally disgusted by it and myself - I just wanted to die.

I begged to go back to the ward/nurses I was used to and luckily as these two wards took each others "overflows" when a bed became available I went "home" - I had been in this ward for 3 weeks before the op and immediately started to pick up, in familiar surroundings with "my" nurses. I started to drink water which tasted like it had come out of a toilet and then a little food and progressed well. Eventually the stoma worked and once I had got used to changing it myself and after the stoma nurse had seen me I went home 12 days after the op. By this time I had got over the shock of it all quite well and was very glad to be alive. I had had a hysterectomy, which I was pleased about, at least I couldn't get anything wrong with that in the future!! What made me wild though was that less than a month before I was admitted for the last time I was told there was nothing wrong with my womb, by the consultant who did the hysteroscopy, and yet after the op he came to see me and said he had to take it out as it was in such a mess!!

I was surprised how weak I was, but one bonus was I had lost about 2 stone and looked great!! It took about 3 weeks before I could do much but should think myself fortunate really because the surgery did go well with no complications (for once). It is difficult getting used to the new me. I still feel like a freak and have a very negative body image. My husband has been very loving and patient - bedroom activities have not been happening for over a year now and I am just too embarrased to feel loving in that way. I used to be so independant and confident, I do hope that feeling will return soon and I am ashamed to say I do feel very tearful a lot of the time. I KNOW I should be grateful that I am alive AND able to do most things again and feel quite guilty when I read other people's stories which are much worse than mine. You are all so brave - I hope a bit of that bravery rubs off on me.

I went back for my post op check in late Sept and the doctor was pleased with me and is now pushing for a reversal op early next year. But I am really scared, to go through all that again plus the fact it might not work, though he is confident it will as I still have healthy bowel attached to my rectum, he says it has a very, very good chance of being 100% successful. Again I KNOW I should be grateful that I CAN have a reversal - so many of you are stuck with a pouch for life. I just dread that it won't work and I may have to have yet another op to have a colostomy again, in which case I would rather stay as I am.

Thanks for giving me the opprtunity to get this off my chest.

Bye for now

Mandy

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