Firstly, I wish to reassure my position is rare and most people go on to live an amazing disease-free life after surgery! They are rarely the ones in support rooms seeking help and comfort or support, so whilst this is a sad situation, it has not all be doom and gloom! I’m alive and I have my surgeries to thank for that!
So where to start... I have had my JPouch for 23 months and before that had a temporary Ileostomy Stoma for 16 months. This is where my surgical journey started after several severe flares of what was thought to be Crohns and is now diagnosed as Indeterminate Colitis, historically it was more Proctitis, I had had numerous treatments from steroids to biologics and nothing was working. The only option was to remove my full colon and secure the remaining detached rectum to my stomach wall to preserve it for later options.
I continued to need suppositories to treat the active inflammation in my rectum so was keen to progress to a JPouch or permanent Ileostomy, so the rectum could be removed one way or another asap. I spent months agonising over the choice, researched as much as I could and gave in to the what if...
My JPouch was created and connected in one surgery on August 23rd 2017, I have covered my experience, good and bad in my blogs.
In summary, I had my rectum removed and only have 1-2cm of cuff left, however despite this, I have continued to have chronic cuffitis and frequent flares of pouchitis since.
I suffer extreme pain in my left side and rectum, frequent episodes of inflammation, bloating, frequency, urgency, fatigue, joint swelling and pain as well as acid output, despite various medications including; Permanent antibiotics, probiotics, biologics, steroid injections in my cuff and various pain therapy.
These have all resulted in extreme side effects and had an immense impact on my social, mental and personal health.
So here I am, this all sounds not much but it has been a time of constant struggle and now reached a peak where I feel I am back as bad as before mu first operation when I had severe Colitis.
I have met with my surgeon and consultant this week and discussed all the options and it all leads to full removal of the JPouch, anus, sphincter and closure of that area completely, alongside a permanent ileostomy Stoma being created.
I reached this decision after much research and debating for many months, I have decided I have had enough, I want my life back and I pray a stoma can give me that.
This is what i have now!
This is where I am struggling… following the meeting with my team yesterday at St Marks Hospital, I am now petrified that I am having extensive surgery with extreme risks during and after. There are no guarantees I will be without lifelong pain, no certainty that the pains I suffer now in my left side and upper stomach will ease or that I won’t have more scar pain or phantom pains where my JPouch and anus once were.
The consultant, surgeon and pouch nurse were amazing and listened, debated and discussed in depth my chances and potential outcome, they seemed extremely concerned that although now I live in pain daily etc, that after surgery I may also still live in pain but also have a stoma to manage.
Despite the concerns the team agrees it is the only and best chance for me now. This has taken away the initial relief of finally making the decision to operate and replaced it with feeling scared and helpless, out of options!
The consultant and Surgeon have referred me to another top surgeon at the hospital whom has much experience of removing failed pouches, this is to enable me to ask questions and get a clear picture of what I am facing, also to check nothing has been missed out or overlooked!
The pouch nurse knows me well and believes I am physical and mentally strong enough to get through this, that although I have chronic cuff issues, structurally my insides are good. All my surgeries have been laparoscopic and this will also.
My surgeon will be looking whilst inside to check for adhesions on my left side and issues with my left ovary. I suffer extreme pain there every 2 months and my gynecologist suspects scar issues that my surgeon can work on whilst operating.
The surgery is a long one and has a reasonable length stay in after, then it will be down to my body, how well and fast it goes from there. Full removal and closure have many risks of infection, sinus and other complications. It also leaves a large space in the pelvis that it is hoped the uterus will move into and fill, there is a risk the small bowel can drop into the cavity and cause issues but this is not common.
The final stage is what I will end up with
My surgeon will be looking whilst inside to check for adhesions on my left side and issues with my left ovary. I suffer extreme pain there every 2 months and my gynaecologist suspects scar issues that my surgeon can work on whilst operating.
It’s a long road ahead! I have been referred for pain clinic and some mental health support in the meantime, unfortunately they will all probably come too late as the waiting lists are approx. a year!
Today I am starting Gabapentin to manage the pain until help arrives and my team want me to replace the VSL 3 for Symprove as it has had some great response so far.
My team have agreed its appropriate for me to now stop the Stelara as I have suffered severe pressure headaches and feel it is doing more harm than good now. However, the clinical results were good! My disease is stubborn and the Stelara did better than most! I will continue on the antibiotics and suppositories daily for now.
I am struggling to deal with the extremeness of what will happen and what may, or may not work, however, I truly feel if the JPouch is gone and the cuff/anus is gone, I can handle the rest! So now I wait for the call but anticipate it will be many months until I am seen again.
I hope reading my journey helps others facing the same or similar choices, we are not alone! It has helped me to process it by writing it all down and putting it in some order.
It takes guts!