24 years old – yet I am forced to make the biggest decision of my life to date.. and honestly – probably the biggest one yet to come. One that will impact my every day, one that will change my quality of life for better or for worse and one that will generate an entire new way of living for me.
My brain in the past 24 hours has been repeating medical terms including:
Antegrade Colonic Enema (ACE)
Electroconvulsive therapy (ECT)
I wish I could say that all of these words related to very simple medications/tasks in order to fix my colonic dysmotility issue. However; this is far from the case. All of these words are names of major surgeries/procedures that the surgeons are willing to undertake. A choice I am to make and follow through for the rest of my life – AMAZING.
According to my surgeon; he along with the remainder of the colorectal team are stunned about my condition. As an extremely rare case many of the surgeons have not experienced this condition first hand. This has resulted in jumping into the unknown for them and hesitant to complete major surgery, if there is alternate un-researched ways to resolve the issue. To give you an overview: There is ZERO research completed on slow transit constipation in terms of identifying what is right, what is wrong, what to do, what not to do. What there is, is a definition: a slow moving colon that causes chronic constipation. The difficulty; however, arises when there are so many if’s, but’s and maybe’s that collectively, the surgeons are still confused as to how to treat me. They don’t want to affect my life for the worse. They don’t want to leave me with problems for the rest of my life. This my friends.. is why I have been left with the decision of what I want to do .. for me, for my future!
Here is a run down of each surgery:
1. Antegrade Colonic Enema (ACE)
This surgery is often used in children. In fact, there is no evidence to prove that this will work in adults. It is used in children for a similar condition; however, rarely used long term from what I have been told. This surgery involves creating a hole in my stomach through my appendix where a catheter is inserted into my bowel each day. Then liquid enema is inserted in order for my bowels to open. This is a 60 min process each day at the same time.
2. Electroconvulsive Therapy (ECT)
This treatment frightens the hell out of me. My surgeon is a strong believer that the mind affects the gut. The aim of this technique would be for me to stop taking anti-anxiety medication and instead use ECT as an alternative. ECT puts you into seizures which causes reaction in your brain that reduces the anxiety characteristics within you. The idea of doing this is if we combat anxiety and I get off the anti-anxiety that the neurotransmitters will kickstart again and my colon will begin working. This is something that has to be done over a duration of 6 months in order to identify whether it is working.
The good ol’ colostomy bag. For those of you that are unaware.. a colostomy bag is a section of your large bowel opened through a stoma in your stomach. A bag is then used around the stoma in order to effectively catch your shit – delicious. The idea of doing this was to identify whether it was my colon that is not working/whether it is something else that is causing my colon to malfunction.
4. Loop Ileostomy
This is currently of discretion whether this can be used as a long term solution. However; an option none the less. This also, involves having a bag. The difference with an loop ileostomy bag is that my colon stays intact. This rules out many risks; however, results in living with a bag. This bag is connected to my small bowel through a stoma that is brought to the outskirts of my stomach (see photo – the black dot is the stoma site).
5. Colectomy/Ileorectal Anastomosis
Now my friends.. this is the major operation that has been of discussion since the moment I first stepped into hospital 6 weeks ago. It is an extremely invasive operation that is undertaking over the duration of 5 hours. This involves taking my entire large colon out, moving my small bowel down and connecting it (anastomosis) to my rectum. My small bowel (ileum) will then be used as the main functioning bowel. Ultimately connecting the ileum (small bowel) to your rectum (anastomosis): Ileorectal Anastomosis.
This has many risks that can affect you in the future. Risks that could affect me from day to day such as incontinence, bowel obstructions, movement of the constipation to my small bowel resulting in the same issue as present, bleeding and a bundle of other problems. If you wish to have a read further here is the link: Ileorectal Anastomosis.
The question is.. are the risks worth the possibility of it working?
As you can see there are many choices. All with risks that could impact my life for better or for worse. I have had a very long, hard, exhausting think and now THINK I have come to a logical decision. Keep your eyes pealed for my next blog to see which route I have chosen 😋
If you were me.. which would you take?
Thanks for reading,