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ileostomy Reversal Waiting List

John-F
Offline

Hi,

My name is John and I'm 56 years old. In March 2020 I underwent bowel cancer surgery and was left with a temporary ileostomy. 18 months later I am still awaiting surgery to reverse the ileostomy.

To make matters worse I have a significant hernia under the stoma and I need to wear a hernia belt when doing any activity, eg walking, gardening etc. This naturally reduces to capacity of the stoma bag and I am    experiencing many leaks, where the contents of the bag ooze out between the bag seal and my abdomen. I've tried several different types of soma bag but I still suffer leakages with whichever type I use.

Clearly this situation is having a major impact on my life and psychological well being. I have experciced leaks in public places and it is not pleasant having soiled clothing when you are out and about.

So for sereral moths I haven't tended to go much further afield than my local supermarket for fear of leakages or not being able to find a suitable public convenience. On the odd occasions when I do venture out I always carry spare clothes and my stoma accessories in case of emergencies.

So although I was pleased that I had surgery to remove the cancer, life has certainly been no bed of roses since the surgery.

I guess I am posting this to ask if anyone has some suggestions. I am continually calling my cancer support nurse but am unable to get any feedback as to when I can expect the reversal operation. This is due to delays caused by COVID. Although I did read in some other discussion that a patient was die to have the same operation in December 2020, after only 3 moths of the initial bowel cancer surgery. That would suggest that health authorities have different priorities or waiting times and that I am waiting too long for my operation. I have moved out of my original health authority but I wouldn't know how to go about changing this.

Also, should I consider paying for the operation myself. Although this would have a huge impact on my personal finance, it would at least allow me to get my life back. My main concerns with this approach is what if there are any post operative issues, and would I be financially liable for these. Also it doesn't seem fare that a patient can be offered the operation after 3 months and I've been waiting 18 months and still have no date. I guess the later makes me quite angry, especially considering the differcties I am experiencing.

Thank you for your time.

All the best

John

  • Offline

    You could ring your consultants secretary and ask them to ask your consultant if they have a date for your surgery. I rang my consultants sec 10 days ago and received admission papers for 29 sept yesterday. Different problem but they don't mind an inquiry. Your stoma leaking is a problem you could do without, lm sure you would like to get back to full activity soon.  Hope this helps you and you are sorted out soon 

     

  • Offline in reply to Alfieisastar

    Hi

    Thank you for your suggestion, I will give this a go.

    I hope all goes well for you on 29th.

    Regards

    John

     

  • Hi John and thanks for posting,

    I am so sorry to hear about the very difficult time that you have been having. It is hard waiting for an operation particularly when you don't have a potential date.

    You may find it helpful to do what the other forum member suggested and give the consultant's secretary a ring. Let them know about the impact your colostomy is having on your life.

    You may well have had a stoma nurse at the hospital so do get in touch with them to see if they can suggest any products that may make the stoma bag a bit more secure particularly as you have a hernia which must make it so much harder.

    We have some information about having an ileostomy and different suppliers of products. You may find it helpful to give the suppliers a ring to see if they have any suggestions for your leakage problems whilst you are waiting for your reversal. Have a look here

    Do also talk this through with your GP to see what help and advice they can give you. if you want to go down the private route you would need to get a referral from your present surgeon (who may also have a private practice). You may well be able to go back in to the NHS after your operation but you would need to discuss this with your doctor. If you had problems straight after the surgery this would probably be have to be paid for.

    If you do decide to go down the private route then do check with the private surgeon's secretary to find out all the different costs. You can look up general costs and where to find doctors at this link here

    In the first instant I  would try talking to your surgeon and perhaps your GP so you can get more of an idea of how long you are  going to have to wait. You could also have a chat with PALS (Patient Advice and liaison Service) which is available at most hospitals. They represent patients and their families and may be able to find out how long the wait will be at your hospital. Have a look here

    I do hope that their is a solution for your leaking bags and that you are given a date in the  not too distant future. If you would like to discuss any of these points with one of the nurses on the helpline then do get back to us or give us a ring. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    All the Best,

    Catherine

  • Offline in reply to CRUK Nurse Catherine

    Hello John-F,

                         reading your post sure rang a bell with me,since l had similar issues with leakage,but these were more to do with the fact l was trying to stick them onto raw bleeding flesh since my stoma site would not heal.It was eighteen months before l had a reversal,but this was due to my being self employed in hospitality and fitting it in over the winter period.

    You have had some good advice from other respondents,l would only add that you were treated by a multi-discipline team,and l would certainly be very firm in raising the issue to all you are able to contact, The same issue of problems coming from several members of the team at their weekly meetings would highlight the issue and hopefully elicit a positive response.

    l completely understand how degrading having issues in public makes you feel,and does have a real negative effect on you mentally and increases tension and stress,very much the last thing you need when trying to heal yourself from such a trauma,so l would certainly point out to the professionals that there is little point in dragging you out of the abyss,only to let you slowly sink back into a trough of  despair undoing all their good work,

    Like the other replies,whilst accepting that covid has put pressures on the system,it is time for you to press for some definitive answers,and l wish you well in doing so,

                                                                                                             David

  • Offline in reply to CRUK Nurse Catherine

    Hello Catherine,

    Thank you so much for you response.

    I actually did try contacting my consultants secretary last week and left a message on the answer machine, but I still haven't received a response. I don't seem to get any positive info from the MAGS team.

    It looks like I'm caught between a rock and a hard place... I need the consultants input which ever route is open to me for the reversal operation.

    It really is frustrating and depressing. I think if I don't hear back by the end of this week I'll try to contact PALS.

    Once again thank you for your comments.

    Regards

    John

  • Offline in reply to gruntifen

    Hello David,

    Thank you for your response I really appreciate your comments particularly regarding the psychological stress surrounding the leakages.

    Believe me I've made the Consultant and the MAGS team  aware of my situation but it doesn't seem to make any difference. Sometimes it feels like there is very little empathy for my situation and I'm reminded that there is always someone in a worse situation. I was told in June 2021 that I'd get the operation by the end of the month but that never materialised due to COVID causing a backlog in operations. This lead to more anxiety and frustration. Now COVID hospital admissions are on the rise so I guess that will also have a knock on effect?

    Once again thank you for your comments, and wish you all the best for future.

    Regards

    John

     

  • Offline in reply to John-F

    Hello John,

                     your problem is that you are caught up in what the medical team team regard as a sea of drowning people insomuch as delayed delayed treatments leading to crisis situations,whilst perceiving yourself as someone to whom they have issued a lifebelt,and can manage to continue treading water. The reality is that drowning remains a constant threat in rough seas,and you come across as on that no longer has access to constant still calm waters.

                                                                                  l really feel for your predicament and can only hope you are able to convey that the height of your overbearing stress has now reached an untolerable plateau.Whilst saying this l also appreciate that travelling this road  could have a really bad effect upon yourself in ramping up your stress levels,so there is a really difficult path for you to tread.In an ideal world it would be to your advantage to have a really calm talk about your issues to a third party with understanding that could act as an advocate on your behalf.. l was helped tremendously by staff at a Maggies centre,and l am currently unsure as to their operating model with covid,it may be worth looking into seeing if they could provide help.

     l am really sorry l cannot do any more than place a friendly hand upon your shoulder,and still carry a little guilt within me that l am one of the lucky people that got unrestricted help and made it through,so really mean it when l say l hope you can find success shortly,

                                                                                                       take care and be gentle in doing so,

                                                                                                                                                         David

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