An Introduction

Hi!

I have been reading a few of the threads on this forum and thought I would register and introduce myself... chances are I might need to post some questions of my own in the coming weeks and months.

A bit of background... I was first diagnosed with Crohns in 2002 at just 14 years old and was subsequently bombarded with a wide range of medications and other concoctions which ultimately failed to do anything at all to ease my suffering... in the end it got to the point that I needed urgent surgery which resulted in my large bowel being removed completely and an Ileostomy formed. At the time I was told there was a good chance it could be reversed a year or so down the line and, as a result of that, I never really came to terms with it mentally... I basically put a lot of my life on hold just waiting for the reversal surgery. Being only 14/15 at the time didn't really help matters I suppose.

Anyway, the time for the reversal came around and everything went well. I was happy with the result... sure, I had to go to the toilet quite frequently (~12 times a day... that's what happens with no large bowel for storage!) but in my opinion it was a good outcome because it was 'normal'. I got on with my life and, for about 8 years or so, everything went well and I didn't have a single flare up of my Crohns.



Unfortunately my run of luck ended a few months ago and the Crohns is back with a vengeance, this time wreaking havoc in the rectal area. Long story short, 3 setons later we are still not getting anywhere, I have lost a lot of the bowel control I have had since my Ileostomy was reversed and it's got to the point where I am struggling to even get out of the house for any period of time. After talking with my surgeon we decided the best course of action was a loop Ileostomy and my operation is scheduled for the 17th of this month. So... Wednesday. 3 days to go.

Apparently there's still the possibility of a reversal this time around, but I have decided I am going into this with the mindset that it's probably going to be a permanent change... otherwise I might end up doing the same as last time around, sitting around for a year or so just waiting for the reversal operation. Besides, with the rectal damage caused this time around, it's not guaranteed to be an option and I would rather be pleasantly surprised if it does become an option than disappointed if it turns out not to be.



So... that's me. Hi everyone :)

Daniel


PS: Interesting factoid: I was so terrified of the flange leaking / coming away that I had a grand total of 0 baths when I had my original Ileostomy. Obviously I had showers, but I always took them when I was changing the bag anyway, so I took it off before entering the shower (obviously waiting for a 'quiet period' first) and put a new one on afterwards. For the same reason I never contemplated swimming during that time. Hoping to try and overcome that particular issue this time around... because I *like* a long, hot bath by candlelight darnit!

Daniel,

Welcome! You have gone through a lot and all at a young age. Hope this surgery can restore your quality of life.

If you're thinking your ileo is going to be permanent, just wondering why are you going for a loop ileo instead of an end ileo? End ileos are often a lot easier to manage -- they are longer, the output goes more easily down into the bag, and leaking is often less of an issue. I guess it comes down to how important it is to you that there is a chance of reversal.

I've had my permanent ileo for 20 months now.... haven't had a leak in over a year. I take baths and go swimming all the time... things I just love to do.

I do see from reading this forum that some folks whose ileo is temporary just count the days until a reversal and don't really learn to live with it.... so I think you're smart to be aware of that emotional trap.

How much of your rectum are you keeping? Is the inflammation there likely to still be a problem after your surgery?

As Larasmom said, this is a great place to ask questions, so please feel free. Hope all goes well this week.

Sounds like humira is the med (adalumix or something like that.... it's not quite right on the "official" name, although both words are made up, so not sure why it matters....). I've been on that .... hope it works, it does for a lot of people (not me, or else I wouldn't be here, as my surgery happened after all the meds failed).

Humira (like remicade which you had before) suppresses your immune system, so yes, you don't want it when you have an infection, as you don't have your regular defenses to fight the infection.

I think your surgeon probably knows what he's doing regarding loop vs end ileo.... your situation is more complicated w/the infection. I just had everything out all at once -- colon, rectum, anus sewn shut etc. A lot of folks here who have had loop ileos had them as one step in getting a j pouch or in getting reconnected.... so I was thinking of them when I asked the question, but those situations may not be relevant to yours.

Good luck tomorrow w/the surgery. I'll be thinking of you. Keep us posted.

Dan, congratulations. Fantastic that you are sounding so well. This time round, you don't need to be afraid of swimming, etc. All you need to do now is focus on not letting the ostomy hold you back from anything.

go for it now... take a bath!!!

Hi Daniel...welcome. Obviously you have done a lot of reading and found a lot of info to help you. I am no doctor but from all I have read I too think you should double check insofar as the loop vs. permanent ileostomy.

It will be 2 years for hubby soon. Like you he only showered and it wasn't until this past summer he took the plunge and tried our local pool. ABsolutely nothing to worry about once he tried it. We just had a 2 week vacation in Aruba and he was in the pool every day for extended periods. Did not try the ocean as his back is quite bad at the moment and couldn't chance the uneven plane to get to the water and also getting in and out with the mild surf activity.

When you get to that point after healing you will find you do not need to be worried about it. Your baths will be a common enjoyment to look forward to.

Best of luck and welcome again Daniel.

Thanks for all the kind comments everyone, it's quite unusual to be able to discuss this sort of thing openly... whilst I haven't made a secret of it at work or around family etc it's not exactly something that comes up in conversation and even when it does other people don't really know what you're talking about half the time.

ddd45 said...
go for it now... take a bath!!!

One problem with that... my current house doesn't actually have a bathtub! It will have to remain on the todo list for the time being... next house maybe :) Or perhaps I need to find a nice hotel... I do like a nice, long, hot bath but that might be taking it a bit too far...

allbluezoo said...
Did you end up with the loop or end? Curious to hear what your doc had to say to your questions. Glad the healing is going well and you are already back to a bit of work. Take it easy, don't do too much too soon :)

It's a loop, the surgeon recommended that so the possibility of a reversal in future is still an option. I had an end ileostomy previously but that's because there wasn't any inflammation in the rectum or small bowel last time so they could make a clean cut. This time around they had to form the ileostomy higher up and creating an end ileostomy would make a reversal difficult, even if the rectum wasn't removed at the same time. Ultimately I was happy with the decision and that's what matters most.

Daffodil said...
Hello Daniel!!

Welcome! I am sorry I missed you the first time around. I hope all will continue to go well for you. I am 53, and had struggled for 20+ years with ulcerative colitis. I wish I had known how much better my life would have been after my ileostomy! I would have done it 5 years ago. This is a great place, full of wonderful people!

I am in the Mississippi Delta and its cold and grey this morning. Hope you continue to get better and better!!

Fondly,
Mollie

Thanks for the warm welcome... shame the weather here in the UK is also cold and miserable. Raining too, just for good measure. Wouldn't be England without a bit of rain :)

B'Dereh said...
Dan, congratulations. Fantastic that you are sounding so well. This time round, you don't need to be afraid of swimming, etc. All you need to do now is focus on not letting the ostomy hold you back from anything.

Center Parcs here I come! Although... perhaps I should wait for my body to recover a bit more first :) Still a bit sore if I stand around for too long gossiping around the water cooler working :D

September is actually the hottest time of the year very often, but British weather is somewhat unpredictable... you can go from brilliant summer sunshine to a bitterly cold wintery deluge in the space of a few hours... not unusual to see people walking about in shorts and t-shirt in the middle of a downpour because when they left their house a few hours earlier it was a lovely day.