Mucous fistula woes

Good evening,

Welcome to another one of my long-winded rants. I apologize in advance; this one will be depressing. I'm not seeking pity, and I don't want this to sound like a "poor me" post. I just need to write this stuff down and vent some built-up frustration.

As many of you are aware, I recently discovered that I was given a "closed mucous fistula" that isn't actually closed. The gaping hole in my lower abdomen continued to grow to the point that it is now about half as long as my incision. The purpose of it is to drain mucous and blood from my rectal stump so that it doesn't leak into my abdomen when the colitis flares up. I can only assume that the reason the skin broke down is because the rectal stump had a very bad colitis flare-up, probably not unlike the only flare-up I ever had, which led to my surgery. The fistula oozes plenty of blood and mucous, and it's often a smell that brings back some very, very bad memories of the days prior to my surgery. Imagine a potent mixture of iron from the mucous, but also sort of deadness from the colitis. Far worse than any smell that the ostomy could ever produce. Because of the size of the wound, it has opened slightly past the fistula, and so there is exposed muscle/fat/flesh, which is extremely painful all of the time. It is right on my waistline, so there is no way for me to wear clothes without them putting pressure on it, which is fine if I'm sitting for a while, but once I stand up, it is sometimes like I've been stabbed. I've been taking Endone as the need arises; however, it doesn't stop me from wondering why I didn't jump at the opportunity to bring my J-pouch forward from November 23 to yesterday (August 15).

That brings me nicely onto my next point of concern. In the five months that I have had my ileostomy, I have never had a leak in public. I had one time when I got somewhat close when I was only a few days out of the hospital and I was malnourished, so the bags were hard to stick on properly. Yesterday, of all days, when I was already feeling a bit down because I kept thinking, "I could have had surgery today and I wouldn't have these bags to worry about anymore," the gauze-lined bag that covers the fistula leaked as I was about to walk into a lecture. I had only changed it an hour and a half prior, and it leaked because it was full of blood and mucous, not because I didn't put it on properly. So yesterday wasn't a great day.

To be honest, I haven't really felt like myself in a very long time. It's hard being at an age where you're expected to be at the peak of your health and enjoying life, but you've got all these health issues all of the time. Not to mention how big of a blow to the self-esteem having two bags is. I know that no one knows, but I know, and that's where the problem lies. Even though nobody knows or cares, it's hard to allow myself to relax when I'm talking to people that don't know. I don't know why; it's just the way it is.

I apologize for the rant. Once again, I'm not after pity and to tell everyone how hard life is because you all already know firsthand. I just needed to write that down and get it out of the way. I've been feeling exhausted both physically and mentally from this fistula. It's far more work than the ileostomy, and it doesn't help that I wasn't told that it was going to happen and that my surgeon has pretty much told me to either have surgery or learn to manage it. Other than bringing my J-pouch surgery forward, there's nothing he will do.

Sorry for such a long and aggressive rant, and thanks for giving me somewhere that's acceptable for such a rant to be written down.

Hamish.

Hello Hamish.
Thank you very much for your exposition of the circumstances in which you find yourself ('rant')as this is a really effective way of helping to cope with an untenable situation. However, I would like to reiterate what I wrote in an earlier post, that you have a natural gift at expressing yourself in writing about both the physical facts, the social circumstances, the concerns and the psychological/emotional effects these are having.
I would encourage you to continue writing about these things and how you feel about your situation and keep everything you write in a safe place. A memory stick would be good so that when the time comes that your story has a beginning - middle and end, it will be much easier to cut and paste it together to compose your book on the subject. There are other things you might think about doing in this regard, like taking a visual, photographic record of what you are going through so that people can see as well as read about it (a picture is worth a thousand words!).
My journey and rants were documented in rhyming verse - which suited my style of writing about disturbing emotional issues. I have shared these on this site over a period of time because this is an audience that may well understand what the verses are about. At the beginning I did not think there would be very much to write about so the first book was fairly short. However, I still had rants within me and continued to express them in the rhyming format until I had another book and then another. The trilogy is something I now treasure as something positive to come out of negativity and I can look back on it, thinking that it was very useful to keep me sane during those difficult times and now it is a testament to what I was going through. It may not be a best-seller but It continues to help me adjust to a life that I did not ask for but am still having to live.
I hope you can, with your talent for writing, gain something similar by communicating with one eye on bringing it all together at some time in the future.
Best wishes
Bill

There is no need whatsoever to apologise Hamish.

As I have told you in the past, it is no sin to say how you really feel.

Keep writing young fella, you are going through a living hell.

No-one on this site will think any less of you.

V.J.

To lessen my anxiety, I pretend in my mind that everyone has a colostomy bag etc. It takes awhile to train your brain to think this way but it really did help me in the long run. When you feel you aren't 'different' you are free to not carry the worry around with you everyday. Other than looking like my tummy is swollen I've found that doing my best to eliminate any odors gives me the confidence that my colostomy isn't obvious to the casual observer. Also, I remind myself of a point I heard on the tv show 'Dr. Phil'....that is to quit assuming others are so focused on you & your situation.....YOU just aren't that important~!!! Stop thinking that you are...Other people do not sit around & wonder about YOU unless YOU do something to cause them to put attention on your medical situation. i.e. If you had an earlier big coffee spill all down the front of a white shirt....folks may give you a casual glance & then move on & forget all about YOU. They have their own things going on in their daily life and YOU just aren't that important. Why would you be? YOU wouldn't~!!! Being overlooked by most people has never felt so good. Tap into that confidence YOU have hiding inside you somewhere & you'll see Dr. Phil is right. Also, if someone questions me, I simply say '....I am wearing a medical device...' It's only a big deal to YOU not casual acquaintances. Reverse this inside your head...if someone said to you "oh that is not big deal, it's just a medical device I wear" ....I bet your curiosity would be satisfied & your mind would immediately move on to some other more pressing matters. I found that once I did this a few times, I felt prepared to deal with all other people. I hope this helps & please stop worrying so much.....'YOU are just not that important'. Now, doesn't that feel good?

Hi Hungry Hamster,
I have written to you before; it's a tough call you made to carry on your studies, and I respect that. I would personally, in your shoes, try and go for the J-pouch soon. As soon as you can fit it in. We can't really delay the key moments of surgery for too long. That's my experience. Like you, I have not had much in the way of leaks in public, but when they occur (and my recollection is a bit similar exactly to yours), there's no getting away from how self-conscious one feels. Two bags is a fair bit to deal with. I try, and of course, have spares and a kit on hand in a side bag, but you will know that. If issues are a concern, try and get some input from your college and talk to someone. Essentially, you are coping with a kind of disability, and though some may not like that term, and I don't myself, it's recognized as an appliance that facilitates motions, etc., in that precise sense in UK state government lore. I imagine other states and countries have such legislation. So, and this is partly my experience as a HE Tutor in the past speaking, get input from your college and get them onside if you have not done so already.
Regards,
Stephen

Living with Your Ostomy | Hollister