Pouch Stories

My Story…by Buddug James

I did not suffer for very long with ulcerative colitis before being operated on. I became ill on the 8th August 1997. I had diarrhoea within half an hour of eating some gammon. This always stuck in the back of my mind and I was amazed when I read your article on food poisoning in Issue 14. However, I was diagnosed very quickly as having UC by my G.P. (within three weeks).

I was given steroids to take (both ends) for several months and did recover quite well until I had a horrific colonoscopy (if someone offered me a million pounds I seriously would not contemplate having it done to me again) .Then the UC returned immediately with a vengeance I was back on the steroids and numerous other tablets and creams.

To cut a long story short, by the beginning of January 1998, I was getting worse, totally depressed, in severe pain and desperate. I begged for an appointment at the hospital and tipped a carrier bag of tablets on the doctor’s desk and informed him that I was not going to take another tablet (I was on about 27 tablets a day). In the end, I do not think they knew what and how many tablets they were prescribing to me.

That afternoon I was admitted for the first time into hospital. They observed me for a week and gave me intravenous steroid by drip . It did not work. My colon was well and truly ‘cream-crackered’. I was told that it would have to be removed and that I would have a bag instead.

I had such mixed emotions – the main ones being fright and relief. Relief, that I would be better and fright of the unknown future – a bag of ‘poo’ stuck to my tummy. I felt as if was going to become deformed, and felt I was too young at 32 to be disfigured. I had my whole life ahead of me. But I had to be realistic in the thick of it all and realised sensibly that I could not carry on as I was (house-bound) and that this was my only option.

I was scared, very scared, and had so many questions. My surgeon was brilliant and answered all my questions and I owe him so much. I also owe a great deal to my family, especially my boyfriend (now my fiancé) and my mum. I do not think I could have come through this as well as I did without their tremendous support.

It all happened so quickly that I did not have time to speak to a fellow patient before my first op which was a great shame. One of the worst times however was having to wait a whole week after the op to see if I could have my stoma reversed. When the surgeon told me I would be able to have the reversal and have the pouch, I kissed him - I was that relieved. I was crying with joy.

I recovered really well and went back to work part-time in May and June. I was ready for op number 2 (pouch formation) on the 8th July (boyfriend’s birthday). I had an additional surgeon at this op. So this time I had two brilliant surgeons looking after me. It went well and I was out of hospital after 10 days.

I had managed to speak to a fellow pouchie before this op and he told me to be prepared for a difficult time between op 2 and 3. Boy was he right or was he right? For 3½ weeks I was constantly sick, could not eat and lost over a stone. I went down to 6½ stone and was so weak I could not get out of bed. Needless to say my recent scar was hurting like hell!

I was in and out of hospital trying to find out what was wrong. Eventually, it was discovered that my potassium levels were too low and this was cured by placing me on a drip. Whilst all this was going on I also became paralysed in the mouth. This was very frightening as I thought I had had a mini - stroke on top of everything else. The cause of this was eventually traced to the ‘Stematol’ injection to stop sickness. If this was not enough I also had major problems at this time with leaks.

This was my lowest point. I was supposed to have my 3rd and final op at the end of August but had to wait until the end of September because of this hiccup.

Since the 26th of September (date of op) my pouch and I have not looked back! No more incontinence and soiled knickers. No more pain. No more being house-bound. No more being frightened of what to eat/drink. No more depression. Instead, plenty of happiness and joy at being alive and living and living and living some more!

I went back to work last January (1999) part-time and have been full-time since March (1999). I have been seriously making up for lost time recently.

At this moment in time, looking back, it does not feel as if I have been through all of this. I knew what I had to go through, dealt with it and just went from one op to the next and eventually came out the other side. I do not know how I did it to be honest, but one thing I do know - I am glad I did.

One very important thing to remember is that even at your worst: “There is always someone else worse off than yourself”.

Another point I would like to add is that the help of a herbalist and reflexologist were an enormous boost to my recovery. The herbalist did wonders throughout helping me with my diet. I had two excellent surgeons, great family and friends supporting me. So anyone who is considering a pouch - GO FOR IT - you only live once. I would only be too willing to speak to anyone who wants advice/reassurance on the pouch op.

Finally, thanks to those ladies who responded to my request for advice on pregnancy recently. And let me wish everyone in the Red Lion Group a Happy New Millennium!

Meet

The 2018 Information Day will take place on Saturday 12 May 2018 at St. Mark's Hospital, Harrow.

Details of the Agenda will be added to the web site in due course.

Last years event was a great success attended by 54 people (excluding Committee members and Presenters).

Recordings of presentations from last years Information Day can be viewed on the web site. 

Please note, the latest edition of ROAR! contains an incorrect date for the information day.

The correct date is Saturday 12 May 2018.

For further information please contact

Susan Burrows
Membership secretary
membership@redliongroup.org 

Download the programme for 2017 information day.

Join

Please download a PDF membership application form to join the Red Lion Group.

Talk

Share your experiences of having a pouch or seek support in our online pouch forum.

Watch

Visit our YouTube channel to learn all about pouches.