John`s Ulcerative Colitis



Ulcerative colitis is a disease of the large bowel ( colon ) and the symptoms are rectal bleeding, diarrhea, mucus discharge, and pain. Drugs can control the problem and removable of the colon is a cure. This means an ileostomy ( bag ) or an internal pouch.

I first started suffering in October 1993 when I noticed blood on my stools. The condition got progressively worse and resulted in two stays in hospital in late 1994 and early 1995. I then survived until April 1998 on steroids and a very restrictive diet ( no dairy produce, bread, beer, cakes etc. ) On the 29th April 1998 I had surgery to remove my colon. This left me with an ileostomy. ( An ileostomy comes out of the ileum and a colostomy comes out of the colon.) But it was a very happy and exciting time for me as I knew I would be cured and be able to do and eat all things that I used to. Living with a bag is easy and the nursing care and backup is great. I can do everything I wish, and eat anything I want. ( Curries do not burn on the way out !! ) However the ileostomy was only temporary as in December 1999 I had an ileoanal pouch formed. This is where an internal pouch is formed from the small intestine and connected to the back side so the depositing of waste is again natural. However the movements will be more frequent and loose. After the formation of the pouch I still had a bag so the pouch can heal.
I was reconnected on the 5th September 2000. I now pass faeces in the normal manner out of my back side but at present (2 weeks post surgery) I have to go to the toilet about 12 times a day. The frequency of movements will decrease over the next year as my insides stretch to give me more storage capacity.


Before I was ill I was very active cycling,running and walking. But once I started with the colitis I stoped the exercise as I thought the body would require all the energy possible to fight the illness. When I finally decided to have surgery I was very weak and could hardly climb the stairs in the house. When I came out of hospital I started rebuilding my strength, at first it was just walking up and down the stairs once, then I built this up to five times, then it was down the drive. Each walk got a bit longer, then I put together another bike (I sold mine when I was really ill). At first it was 100 metres ride along the road but I soon built up. Within months I was riding miles again, a year after my colon removal I cycled 160 miles in a day. I also completed a 25 mile walk. Then I cycled 50 miles to a youth hostel, next day ran 25 miles and then straight after cycled 50 miles home. I was fit again. I was so happy.

When I was in hospital for pouch surgery a doctor was checking me over before the surgery. He spent ages listening to my heart, I asked what was wrong and he said things were working a bit slow. I said I was quite fit but he still kept checking me, so I emphsised that I was really fit ie could cycle 150 miles a day and then he said that was the reason my heart beat was so slow. Apparently I was the only patient he had checked with such a slow heart rate (low 40`s). That made me feel really good.

Later after my pouch surgery when I was having a few complications (I required dilation) I was in hospital have a pre procedure talk and the nurse asked if I was fit, I replied that I had cycled 100 miles the previous weekend in a day and she was horrified, she said I should be taking it easy.

The pictures below show my stomas, bags and old stoma site..

24 hours post colon removal

Stoma and bag.

24 hours after my colon removal and I felt better than before the operation. Surgery lasted about one hour.


The bag and stoma. Its very discreet and does not leak or smell. I change it every morning. The clip at the bottom allows me to empty it.

The stoma.

The stoma is the small intestine coming out of my abdominal wall. What you can see is the inside of the intestine because they fold it inside out so only the inside touch's the waste. I was surprised at how small the scar is.

Stoma post pouch formation.

Close up of loop ileostomy.

When they form the internal pouch you still have a stoma but it is slightly different. It is known as a loop ileostomy because a loop of the small intestine is brought through the abdominal wall and it is sliced half way through to allow the faeces out. A small opening exists under this loop which is the lower side of the cut and this goes down to my pouch and then my back side. If my bag gets full at night sometimes it overflows down this route into my pouch and out of my back side. The scar is also a lot larger as they have to do a lot of internal work. Surgery time was 2 1/2 hours.

I am now very fit and healthy and living life as normal.

The stoma site.

Close up of the stoma site.

The Stoma Site Post Takedown

The Stoma Site (close up)

The above pictures are about 20 days after the takedown. When the takedown is performed all the work is done through the stoma site. This is left to heal from the inside out as it is a dirty site. Initially the stoma site is just a hole, in my case about 45mm x 35mm x 7mm deep. At the base of the hole it was possible to see the muscle of the stomach wall, brown and grained just like the pictures in books. Around the edges the layers from the muscle up to the skin were visible. The wound is kept damp with gauze soaked in saline and growth starts at the muscle and works it way up until it is level with the skin, this is called granulation. The pictures show the granulation about half way up. The dressings are changed every day and the site cleaned.

The above process replicates what goes on under a scab, except this method enables a check to be kept on the wound and for it to be cleaned. Once the granulation reach's the top the sides start growing in.

The Stoma Site About 6 Weeks Post Takedown

The wound continued to heal and it was amazing how the hole shrunk in diameter, leaving practically no trace. The skin is still marked however where my bag used to go. The wound is covered now by a silicon gauze which does not stick and allows moisture to pass up into a dressing placed over it.

December 5th 2000. My stoma site is completely healed and only a red mark remains. I am going to the toilet about 8 times per 24 hours, but 4 times through the night. I am lucky to get 3 hours continual sleep. I take Imodium (2 x 2mg capsules four times a day) and Codeine Phosphate (1 x 30mg tablet before sleep). These drugs thicken up my output and reduce the frequency of my movements. Without them I was going 15 times per 24 hours.
I have to be careful with regards to what I eat as some foods increase output. Beer also makes things more liquid.

The Stoma site healed

The Stoma Site Healed

October 2001

It is now over one year since I was reconnected and my health is great. I am eating and drinking as normal. I can drink lots of beer and eat Indian food without too much trouble. I do a lot of mountain biking and I am very fit. I came 12th in my class (out of over 350) in a 100Km race and 42nd overall out of over 1,000.

I still take small amounts of Imodium and go to the toilet about 8 times a day passing formed stools (according to the hospital passing formed stools is very rare!) I am very happy with all the surgery that I have had done.


I owe the hospital staff a great deal for making me fit and healthy. They probably do not realise how much they have done for me.

December 2002

I am still fit and healthy. I discovered that I had a slight inflammation of the small bit of colon that remains just inside my backside. I am taking steroid foam enamaes and these have helped a lot. I am now getting up only once in the night to go to the toilet. To achieve this I have a large brekfast and lunch then just a snack before bed. I also take a couple of Imodium before my evening meal.

I still feel very grateful to the hospital staff for giving me a near normal life after being so ill. In fact without them I would probably be dead.


September 2006

I now have had the pouch connected for 6 years and it is still working well. My life is quite normal, apart from going to the toilet more often than most people. I have to be careful with what I eat, sweet food and drinks seem worse. I can drink alcohol but I do not drink often now, the next day is too precious to waste with hangover! I have started making my own juice from fruit and veg. It includes the following: Oranges, pears, limes, lemons, cucumber, carrots, red, yellow and green peppers, ginger, tomatos, brocilli, spinach and any other fruit and veg I fancy. It is very refreshing and the fibre is removed in the juicing process.

I am still mountain biking and running plus now rock climbing. The outdoor life can make toilet visits difficult, recently while climbing on sea cliffs there was no where descrete to "go" so I had to go swimming in the sea!

I still drink Dioralyte salt and mineral replacement, occasionally use the foam enemas and the Imodium. I rarely sleep through the night and most times get up twice in the night but it does depend on what I eat.

May 2007

Half Marathon Completed.... 1 hour 36 mins 55 secs 2905th out of over 40,000

I ran my first half marathon on May 12th 2007. I started slowly as I didnt know how I would feel, but at about 1/3rd distance I felt strong so started running faster. The big problem though was the amount of people. I was running faster than nearly everybody around me so spent the whole event overtaking people but a lot of the time there wasnt room.
I was amazed and stunned at my time and overall position, much better than I ever expected. I had done some training but not much.

Afterwards I went to the toilet and lots of blood came out but fortunately this only happened the once and all is back to normal now. My legs ached badly and I was very stiff for a couple of days, but this shows I ran hard.

Here are my split times, note how my times improve as the race goes on. (Race distance is 21km and 97metres)














May 2008

This year it is mountain biking. I am training for a 24 hour team bike race. As part of my training I entered a 70km off road race and came 18th out of 600. My fitness is OK but I have had a few pouch problems. I have been getting urgent needs for the toilet. A camera inspection revealed some ulcers in the pouch. A course of antibiotics should hopefully clear things up. I am still taking Dioralyte, Imodium and Colifoam.

November 2009

So far this year the pouch has behaved itself. My diet is still varied and I still drink some beer. I take 2 Imodium before my evening meal and drink 3 sachets of Dioralyte salt and mineral replacement through the night. I mix this before I go to bed in a cycling drinking bottle and drink it through the night. I feel that as my stomach is empty the Dioralyte will be absorbed easiy though the stomach. Taking Dioralyte helps prevent dry skin on my face. Also Dioralyte is a fantastic cure for a hangover. It rehydrates and doesnt upset the stomach as it is electrolytically balanced.

I still rarely sleep through the night and most nights need to get up for the toilet about twice. This is a pain when camping and it is raining, but that is my only complaint about the pouch.

This year has been all about rock climbing for me. I have not done much biking or running but have completed over 300 rock climbs in the UK, Sardinia and Spain.

At the end of 2008 I was made redundant but managed to find another job. However this was not enjoyable so I quit in October and am currently unemployed. Maybe this was foolish considering the current economic climate, but being ill has made me realise that life is too short and fragile to be doing something that I dont enjoy, better to be happy and poor than have some money and be miserable.


March 2010

Back in work doing an enjoyable job 5 minutes from home. Having a short commute is great!
The pouch has not been that good, sometimes I am going to the toilet 6 times a night with some leakage. A scope into the pouch showed slight pouchitis. For this I was prescribed Co-amoxiclav 125mg three times a day for 2 weeks. I also started taking VSL#3 once a day. This is a probiotic and is supposed to keep the bowel and pouch healthy. The pouch is working well.

April 2011

At the age of 42 I finally got married.

September 2011

I am getting more urgency and needing the toilet quite a few times in the night. This time I was given Ciprofloxacin 1 x 500mg twice a day for a week. This really helps and while on this I only get up once a night for the toilet with no urgency. It is great! When not on the Cipro I take VSL#3 probiotic and 3 sachets of Dioralyte through the night.


Novemeber and December 2011

The pouch is not functioning well. I have urgent needs to go to the toilet with some night time leakage.

14th December 2011: Cipro 500mg twice a day for 10 days. Some improvement.

Jan 2012: Many urgent needs for the toilet, UC like feelings, 5 or 6 times a night.

6th Feb 2012: Look into the pouch, slight pouchitis. Given Flagyl 500mg suppositories. 1 per day for a week, then a week off and then 1 per day for a week.

14th Feb 2012 : Still going a lot in the night with urgent needs. I am thinking the pouch is near the end of its life (it is 12 years old) and I may have to go back to a stoma. I am advised to try Cipro 1 x 500mg twice per day for a week, then a week off and then a week on and a week off etc etc.

March 2012: My pouch function is much better. I think the Cipro is really helping.

However Ihave discovered something else that I think may be causing the pouchitis and poor pouch function. I drink a lot of water and always have a cycling water bottle with me that I refill many times a day. I also use this to mix and drink my Dioralyte from during the evening. Plus with my cycling I use a hydration bladder. I had noticed that my pouch function was worse after using my hydration bladder even though I clean and steralise it often. I had also noticed slime and mould forming in my drink bottle even though I thought I cleaned it often.

So I am now really taking care with my bottle and bladder hygeine. I mix my Dioralyte in a glass and use it one. I bought a new hydration bladder and steralise it very week. My drinking bottle is an EPA free one that seems to stay clean.

June 2012

The pouch is working well. I get up twice a night (sometimes only once) for the toilet and do not have much urgency. I can live with the pouch again. My daily drugs are: 2 x sachets of Dioralyte drunk through the night when I get up for the toilet. 1 x sachet of VSL#3 every evening after tea.
I did a few months of the Cipro (on a week off a week) and it seemed to help. Then I had a month or so off as I am concerned about taking too many antibiotics.
Food: I have porridge for breakfast, my main meal at lunch time (meat, potatoes or pasta and veg plus pudding) and a snack in the evening.
Exercise: Cycling on average 50 miles a week.

I think that keeping all my drinking bottles clean has really helped.

Being a Parent

I am going to be a father in October. I have a slight worry that our child may have / get UC as I have heard it could be passed on. My father has suffered from UC but never as bad as I did. However if our child does suffer I will have lots of experience to pass on and I am sure we will all cope. Most people have some problems or illnesses at sometime in their lives so if we are not prepared for our child to be ill in some way or other we should not have had children. What I am trying to say is that any child can be ill and the risk of it having UC is probably no higher than any other illness. Anyway we shall see what happens.


If you have any questions about ulcerative colitis please e-mail me. ( See Contact Us ). Thank you to all the people who have emailed and told me how useful this page is. I hope you all manage to make the most of your life.

Useful website.
This site offers advice and discussion for the internal pouch.

Radar. In the UK there are many disabled toilets that can only be accessed with a special key. This is available to purchase from Radar. I have one and find it very useful. The toilets are cleaner and better equipped than normal toilets, plus I can always use them when the normal toilets are locked, such as at night. Also in London you can use the toilets (for example in stations) for free instead of being charged.