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HELP Bowel Cancer- Ileostomy Problems.

3 Mar 2019 10:38

I do not know which way to turn, regarding both my resection in October last year and my Ileostomy reversal 4 weeks ago.

Since the reversal I have had severe Diarrhoea and now been diagnosed as Haemorrhoids.

  I was going toilet 30 or more times, daily and had a lot of accidents. Now managed to reduce this to 18 to 20 times by taking Loperamide 2.0mg 8 times a day.

Almost housebound as unable to stray far from a loo and had an accident going to the Doctors which was embarrassing.

  Also slowly increasing my fibre and small diet changes suggested by my Colorectal nurse.

Now been given a number, of different creams by my GP to help with the burning sensation and the pain is a bad, as the operation itself now.

  I have spoken to my Stoma Nurse but have referred me to my Colorectal Nurse, the advice given was to consult my GP. But my GP has said to speak to the Colorectal Clinician.

Now just going around in circles and wish I had never had the Resection or any of the operations and let the Cancer take its course.

  What makes matters worse, my normal stoma nurse retired and last week my Colorectal contact has also, retired and I have been unable to speak too either replacement, due to staff shortages.

  Hopefully this can be resolved, as the pain is now getting bad, both internal and external around my bottom, becoming impossible to manage.

VirgilA

HELP Bowel Cancer- Ileostomy Problems.

5 Mar 2019 13:05 in response to VirgilA

Dear Virgil, 

Thank you for your enquiry. I am very sorry to learn about the problems you are having, I can imagine how frustrating and disheartening this is.   

Most people have a change in bowel habit after an ileostomy reversal, but it usually improves and becomes more settled over time. So try not to despair because I think you can still expect things to pick up in the year ahead. 

The stoma and colorectal nurses probably suggested seeing your GP so the GP could assess the anal pain.  Perpetual diarrhoea can make the skin around the anus very sore and painful. Haemorrhoids are a separate condition and can also be very painful.  As skin care and creams don't seem to be working it is reasonable to see the GP again about this pain, so they know it is no better, and ask what else can be done. There are different ways to treat haemorrhoids which you can read about on the NHS website.  If need be, the GP should be able to contact your colorectal surgeon for advice.  

You could also try and speak directly to your colorectal surgeon and ask if they can see you or if they can expedite contact from another nurse in the hospital colorectal team. I think the local colorectal nurses who have supported other patients in similar sorts of situations are likely to be your best source of advice about diet, bowel habit and other things to help you to regain some quality of life. 

Two bowel cancer charities that have recently merged, Bowel Cancer UK and Beating Bowel Cancer, have a helpful booklet about regaining bowel control. If you haven't already seen this, you can download it at this link

They also have a nurse enquiry service  .

I am sorry I can't be more specific, but do hope that things  improve for you. 

If you want to talk anything over please give us a call 0808 800 4040, we are here from 9-5,  Monday to Friday.

Best wishes, 

Julia 

HELP Bowel Cancer- Ileostomy Problems.

15 Mar 2019 06:01 in response to CRUK Nurse Julia

Dear Julia, apologies for the delay in replying to your welcomed response.

As you have suggested I have once again spoken to my surgery and will be seen next week regarding the ongoing worsening situation after the Stoma reversal.  Also spoken to a Colorectal nurse at a different hospital, but still within my Health Authority, as I was unable to speak to my designated contact.

  My GP has also written to my consultant that performed both operations, with a view to an urgent review of my ongoing condition. Only being made worse by countless bowel movements and the severe diarrhoea.

  Also now showing significant weight loss of several stone, which some people would welcome but also now a big concern, despite maintaining a regular meal regime of eating 5 or 6 small meals at regular intervals throughout the day. Also slowly introducing more fibre and high protein foods including lots of fish, vegetables and fruit as recommended.

 I do appreciate that it is still very early days after what was major surgery and will take time to heal and hopefully return too somewhere near normal bodily functions. But also expect it may never be back completely how things were.

  At the end of the day, I do consider myself one of the more fortunate people, due to advances in Cancer Research and early detection, will hopefully make a full recovery

 Once again thank you for your support.

Kind Regards

Virgil

HELP Bowel Cancer- Ileostomy Problems.

17 Apr 2019 11:40 in response to VirgilA

Hi VirgilA, my husband had a reversal a year ago.. It is dreadful to begin with but will slowly improve. He stayed away from all fruits and veg for quite a few weeks and tended to eat only morning and evening at home when near a toilet as he would have to get there very fast and numerous times. If you can tolerate a long foodless gap it will really help give you a bit more freedom. I would say things really improved once he got to the three month mark and continue to get better. There are still foods that he needs to avoid but generally he can live close to a normal life.The improvement is continuing so please hang on in there  

HELP Bowel Cancer- Ileostomy Problems.

26 Apr 2019 09:41 in response to JEA

Hi Jea Sorry for late response, not been so good. Encouraging information. Like your husband avoiding fruit and veg  still, as well as lots of other things on the list. Changed back on the  bread side only part way at the moment as do not enjoy white bread. Things like baked beans or anything that causes wind as very dangerous at the momen. Had a few accidents unfortunately so not venturing like your husband far from the loos still. Now been  12 weeks since my reversal and unfortunately not  alot of improvement. Getting severe pain from Ileostomy henia repair as well as stitches came away befor I was discharged from the Bowel resection when I first had the Ileostomy. Lost 4 stitches and they said I would have that restitched everyday before being discharged, but never happend. Caused the hernia. Currently taking between 10 and 15 Loperamide everyday. Still 20 or so visits a day to the loo. 

 

HELP Bowel Cancer- Ileostomy Problems.

26 Apr 2019 16:27 in response to VirgilA

Hi, 

Please don't worry about needing to reply, you have enough going on and don't need to add that to your list of worries! It sounds like you have had some complications with your hernia which can't have helped. My husband had a few mishaps (including in a very busy restaurant on our first hotel break post treatment). This bowel cancer business really does throw every level of embarrassment at you  - but I'm slowly finding myself laughing at some of it but that took time and distance!!  

I hope you have a good team to support you (both at the hospital and at home) as you do need all the support you can get. I really do wish you well with your recovery. It is a rubbish situation to find yourself in and a long haul to recover but you will get there.