Newbie with a Permanent Stoma

Thought I would share my experience with members of this site to help people considering options before surgery and to know what to expect as no one seems to get down to the nitty gritty of what happens. It really does not have to be as bad as you might first imagine.

I was first diagnosed with Ulcerative Colitis in 1976 aged 24 and I was horrified by the prospect of surgery but thankfully the condition has been managed with medication etc since then. There have been big and small flare ups along the way and in the earlier years of the illness my lifestyle was a little restricted but over time things were ‘relatively’ stable without adversely affecting my lifestyle very much at all. In many ways I have been very lucky as my UC was not especially debilitating or as painful compared to some sufferers of UC or Crohn’s. The last few years have been pretty stable and I have not had my lifestyle restricted much at all, several trips to the USA on business, a couple of flydrive holidays in the USA including 2010 pulling in Boston, Toronto, Niagara Falls and back to Boston altogether I drove around 2,000 miles with no toilet issues.

I had managed to avoid surgery for around 39 years but I always understood that the longer you had this condition the greater risk of serious complications developing in later years. I was regularly reviewed by a series of consultants at my local hospital and the reviews included annual surveillance with a colonoscopy, biopsies etc. Essentially this involved passing a camera on a flexible tube up the back passage and biopsies were taken at various sites round the colon.

All had been fine for many years and during the last few years of the surveillance I had been receiving copies of the post colonoscopy reports and consultants correspondence to my GP etc. I could see how my illness was progressing so it did not come as a great shock to me when the last couple of ‘pit inspections’ in 2014 and 2015 indicated that there had been some unwelcome changes to the bowel tissue. I was advised that there was a greater than 50% chance of the condition developing into an aggressive form of cancer within the next 5 years. Perversely, for the last couple of years I had been feeling the best and happiest that I have been for a long time. It’s a strange old world!

I researched options eg, the ‘full monty’, ‘J’ Pouch and variations of the same, I was not impressed with the idea of ‘bum burn’ frequent visits to the toilet and several surgical procedures. I discussed the options with my consultant and it was agreed that the most appropriate option going forward was to have a procedure called a pan-proctocolectomy with end ileostomy which involved removing the colon, rectum and anus and creating an opening in my belly for the stoma. Laprascopic v open procedure was considered but the reality was that being a bit obese limited the choices. It was a ‘no brainer’ really and at the age of 63 I had my surgery in mid April 2016. The ‘open’ surgery took around 5½ hours and my hospital stay lasted for about 7 days.

I felt dreadful for the first few hours after surgery coming out of the anaesthetic etc is not the most pleasant experience but in many ways I was quite surprised post surgery. The procedure had not been as painful as I had thought it would be and I only used pain killers for about 10 days after discharge from hospital. I really didn’t feel anywhere near as bad as I was expecting either physically or mentally. Amazing what 39 years, a wife and 2 children can do to your perspective.

Output into my new friend started up pretty quickly and I found managing ‘the bag’ was not as bad as I was expecting once you get into the routine. Sure, inevitability it changes things a bit which should not be underestimated. Initially I have to sensible with what I eat and the diet changes a little, some foods are best avoided. I empty my bag around 5-6 times a day and the output thickness varies with what I eat. I decide to stick with the clear bags so I can monitor how my digestion process is going on.

My belly wound healed quite quickly which I think was helped by using a few drops of Bio oil on the wound twice a day once the glue used during surgery had all gone and there was no open wound. The wound on my bottom has taken much longer to heal but with everything removed there is no mucus discharge, blood or any other kind of discharge from my bottom, it’s all sewn up and eventually completely healed. Initially I used Cavilon No Sting Barrier Film Foam 1ml applicator twice a day subsequently reducing to once a day. The District Nurse came every fortnight to review how my bottom way healing and I was finally discharged by the District Nurse in mid November. I had been advised that until my bottom was fully healed I should refrain from swimming to avoid picking up an infection, but from mid November I was cleared to start swimming again. The wound on my bottom was a bit of a nuisance in the early days as I had to wear a large pad (old guys nappy in reality) on my bottom progressively reducing in size (as a bloke found it really strange using my wife’s sanitary towels) these were phased out after a few months.

I had been give some very poor advise before surgery and was told to sit comfortably it would be helpful to have a ‘ring’ cushion to sit on. It is really important not to do this, I believe that by sitting on the ring in my first couple of weeks effectively pulled the wound apart causing the healing process to be extended much longer that would have otherwise been the case. When the District Nurse first visited me at home she strongly advised against using the ring for exactly that reason. The only real issue I have now is that like many ostomates I have developed a parastomal hernia and I am not entirely sure how I could have avoided that. I rarely get any pain, in fact I think post op I have only had one belly ache and I think it was more to do with the curry than anything else!

There is loads of information out there on the internet about products for ostomates, Support belts, Stoma Protectors, Swimming Wraps etc it’s important to find what suits you.

It is a huge change and in reality I would have preferred not to need the surgery, but it is manageable, life can return to some semblance of normality.

There is of course a silver lining to every cloud; I will never suffer with piles!!!

I hope the above is helpful, good luck.

2 Replies

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  • Thank you for the insightful account and the help this is giving me

    This sounded like a major operation which you have managed extremely well, you sound a very positive person.

    I am due major surgery next week and a potential ileostomy which i am really scared off

    52 and scared, crazy really !!!!

    I have had Crohns for some 25years and have had a few set backs and a major resection but have managed well until present , especially with the Humira but i now need another resection of the bowel and maybe more but not sure of the severity of the operation until they go in .........

    It is good to hear other peoples accounts and treatment and especially how they coped and the creams/ medications /devices etc they use to help with the healing and recovery

    There is a lot of help and advice out there but unless you know where to look you end up reading a lot of scary things and advice from companies attempting to sell you things

    i am trying to research but difficult until i actually know what i am going to wake up with

    Keep going strong and thank you for sharing your experiences.

    Blessings

  • Hi, the uncertanty of knowing what is actually going to happen must be horrible. Despite all the stuff we hear about A&E our NHS is pretty fantastic and I am sure they will do the very best for you. From my perspective and from what I have read from many other ostomates the perception we all have before an ileostomy is much much worse than the reality. Good luck for next week. All the best.

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