For the past three years or so I've relied on a pretty potent drug ('Prednisolone') to provide relief from my Crohn's symptoms, it's the only thing that works to slow down my bowel movements and to help keep severe bowel cramps at bay. It is a 'corticosteroid' used to treat inflammatory diseases and it is very much my "silver bullet". Unfortunately I cannot continue taking it indefinitely due to long term side effects such as 'osteoperosis' (bone weakening), 'glaucoma' (damage to eyes), diabetes....the list goes on. Furthermore, the drug doens't actually curtail my Crohn's activity since my inflammatory markers remain high despite having times where I'm seemingly symptom free.
Being "symptom free" brings me drive and determination to try to live life to the full and for this I am very grateful to my old friend, Prednisolone. Right now it is quite strange though because I'm feeling very well, yet I know I need to go ahead with bowel surgery. Every now and then I wonder if I do really need to have the ileostomy, but the truth is that I have a dependency on a pretty nasty drug and despite the apparent well being it provides me, I must always be conscious that I'm actually not well. This is difficult to accept at times and I can appreciate how difficult it is for some people to overcome a drug dependency.
The online Crohn's forum (www.crohnsforum.com) has become my most visited website over the last couple of months. This is an online community of people affected by Crohn's and to a lesser degree Ulcerative Colitis. Whilst sharing my thoughts and experiences with my family and friends is really important to me, I can't recommend this forum highly enough to anyone with Crohn's since there is probably no bigger community of sufferers in the world, and if there is - it's certainly not as accessible as the online platform of the forum. I have subscribed to the stoma sub-forum and have gotten to hear from several others who have had ileostomies, and they have given me some great advice about the day-to-day issues/challenges. It's funny, many of my fellow ostomates have actually named their stoma! It seems like the little guys tend to have a "personality" and part of learning to deal with them is to understand the quirks they provide - and no two seem to be the same.
Plan leading up to surgery
So here's what I'll be up to over the next week and a half:
- Mon 11th Feb - pre-admissions appointment to check fitness for surgery followed by an appointment to see my stoma nurse.
- Mon 18th - final pre-surgery stoma nurse appointment to mark my abdomen with the stoma location
- Tues 19th - admission to hospital where the "clear out" process begins (having had colonoscopies, I know I'll hate that bit!)
- Wed 20th - surgery. My stoma will be born
Now I just have to think of a name for mine! If this week is anything to go by, I'll be awake for hours on end in the dead of the night so I'll probably have plenty opportunity to think it over...
“O Sleep, O Gentle Sleep, Natures Soft Nurse, How Have I Frightend Thee, That Thou No More Wilt Weigh my Eye-Lids Down And Steep My Senses In Forgetfulness?” ― William Shakespeare