Friday, January 1, 2016

Finding out I need an Ileostomy

My name is Isobel. I am 41 years old with a catalogue of underlying medical conditions which encompass Ehlers-Danlos Syndrome-Hypermobility Type, Fibromyalgia, PoTS, a Functional Bowel Disorder (linked to my EDS-HT) and Diverticular disease. I am a Bowen Practitioner, and author of several books about EDS-HT and The Bowen Technique, and numerous other academic papers.

I have written several blogs about my journey through injury and rehabilitation at the helm of my connective tissue disorder, EDS-HT

In 2012 I was diagnosed with Diverticular Disease and had two episodes of active Diverticulitis in 2013, one requiring hospitalisation, and other hospitalisation in 2014. In 2014 I also had a total hysterectomy because of a long-term history of endometriosis. I had also had Irritable Bowel Syndrome symptoms for many years. After the hysterectomy my bowel symptoms gradually worsened. It was also known I had a Functional Bowel Disorder - symptoms overlap to IBS - at the helm of my EDS-HT - digestive problems are rife in this and the Fibromyalgia population. I had several hospitalisations owing to pain and because my guts just "blew-up" - This was put down to my IBD/IBS and diverticular disease. Eventually some doctors also tried, extremely wrongly to imply that it was psychosomatic, a very dangerous path to tread.

Later in 2014 I was also diagnosed with a condition called ACNES - Acute Cutaneous Nerve Entrapment Syndrome - treatment being local/steroid anaesthetic injections. For good measure I also had problems with anal fissures and fistulas. In total I have had 4 surgeries to repair fistulas and fissures, including one surgery where I had developed a peri-anal abcess for good measure. In early 2015 I then had an MRI Proctogram where you have to do a stimulated bowel movement with radioactive jelly which showed that I had a number of organ prolapses including an entrocele (small intestine prolapse), cystocele (bladder prolapse), rectocele (rectal pouch/slippage) and significant rectal intussusception which is where the rectum telescopes in on itself. Later on I was diagnosed with Obstructive Defecation. I had undergone Biofeedback training - although I also have lax pelvic floor muscles (mainly related to EDS-HT), and had endured months and years of difficulty going to the toilet, doing numerous unsatisfactory bowel movements and having overflow diarhoea and ensuing constipation.

Medically I tried a number of drugs, and all IBS  type of drugs, as I am fortunate enough to attend an expert EDS Gastroenterology clinic. Most of these have generally failed - I remain on laxatives and a gut-stimulating drug. These only partially help. I also changed my diet. I had to try the Low-Fodmap diet, and eliminating diet where I discovered that wheat and gluten were significant culprits. I cut these foods out from July 2014, have lost a lot of weight since and not looked back. I was also put under a nutritionist who has looked after me very well since, advising on my diet and putting me on various nutritional supplements which have at least well-supported my immune system.

In October 2015 I attended the Diverticulitis clinic, where  I was casually told as a first line spoken sentence by a doctor I didn't know that I would probably lose some of my bowel. In fact, in 2014 I had started to ask if this could happen, because  I was so desperate with the terrible situation that I was living with - no fun having to run off buses into random offices to relieve oneself. In November 2015 I ended up having an emergency admission because of a diverticulitis attack. As it was, this was to become the final swan-song.

I had a pre-arranged surgery in December 2015 in order to repair all my organ prolapses - a Laparoscopic Mesh Rectopexy Surgery  When the surgeons discovered that I had a diverticulitis episode only the month before, they had to change tack. I was told that I wouldn't lose my bowel that day - (it still didn't really occur to me that  might, given the total reluctance in 2014). The laparoscopy revealed inflamed pelvic adhesions because of previous surgery - something I had always thought was the case, but told it wasn't. I am frequently right about things(!) The laparoscopy also showed that the sigmoid colon had significant inflammation and diverticular disease. It also showed a rectocele and sigmoidocele and also lax pelvic floor muscles. The recommendation was for a (reversible) 'loop ilesotomy' where they would take a significant amount of bowel (particularly the sigmoid colon) and to repair the organ prolapses. This surgery is taking place this month, in January 2016.

Although I have started to do a significant amount of reading about having an ileostomy, where the small intestine is used as a way to eliminate faeces, thus by-passing the colon. It involves a Stoma - Greek for mouth - opening into the right iliac fossa area by the right umbilicus and involves a stoma bag in which to collect faecal material. This just all sound horrendous and terrifying. I have had a lengthy discussion with a woman who lives with one and says it was the  best thing she did. I have also been on Facebook forums and other stoma-related websites. I am going to be speaking to my surgeon again this week to see whether this really is my only choice, but it is going to be such a huge change to my lifestyle and diet. I am frightened about how I will manage it. The loss of eating out and social events (to start with), and how unattractive I am going to feel with this bag on my tummy. I have an appointment with another stoma nurse next week. This is the beginning of my journey into having an ileostomy.