Negativity

You will hear nothing but positive feed back from me when it comes to quality of life since having my surgery!! I had severe, drug refractory ulcerative colitis, and chose to have a total proctocolectomy with permanent ileostomy. Well, the surgery wasn't really a choice....I was dying...but I could've gone for a J-Pouch, but decided the ileostomy was the way I wanted to go. Starting with the instant I woke up from the surgery, I have felt better and better every day. Not for one second have I questioned or regretted the choices I made...that surgery and my stoma saved me life.

Sure, life is a bit different now. There were learning curves and adjustments, but it is already all 2nd nature to me, and my surgery was only 3 months ago. At this point I am eating most anything I want, going where I want, getting back into exercising and enjoying my life in a way I never could while I was sick. I am a very active and young ish female, and don't think having the ileostomy will hold me back or lessen my quality of life in any way.

Good luck with your upcoming surgery and please let me know if you have any questions. It can certainly be an overwhelming time!

I could not be happier with my stoma! And I was kicking and screaming trying to avoid surgery for years. It is now around a 7 weeks old end ileo that I intend right now to be my permanent output (still eligible for jpouch but I think this suits my lifestyle much better)- vs my chronic UC and my surgery was elective, with me virtually on perpetual smoldering remission that sounds a lot less symptomatic than the hard core deniers who live on the UC forum perpetually tweaking amino acids or MTHFR or excited about the latest franken-drug that ends in "-ab". I have been walking up to 8 miles a day a month after surgery and in the next few weeks will be back to weight training, biking and tennis. Med and pain free. Life is looking good!

PS to somedude- this is not cool aid but how I truly feel. I have as much a right to feel this way as any whiner! Do I think it is sad that I had to make the decision? Sure. Do I care about that anymore? Nope. i am on living my life now. memo to UC- goodbye and good riddance!

Post Edited (Probiotic) : 6/21/2013 3:21:47 PM (GMT-6)

Thanks, everyone! What a lift you have given me. I knew you were out there, but lately all I have mostly seen was so much whining and complaining that I was thinking maybe I won't be better off at all after surgery, but just a different kind of miserable! These responses are what I need to change my attitude back to acceptance and hopefulness. I am still trying to avoid surgery and am always hoping for a miracle, like a new drug that will work for me or maybe a remission that lasts and lasts. I am truly sorry for those who are suffering after surgery and feel hopeless, but I so don't want to be like that. I want to be a healthy and happy survivor and thumb my nose at this nasty disease! Thanks again.

I have nothing but good things to say about having had surgery. It has been a wonderful 6+ years. I even had an adhesion that required surgery but I'm still happy with my surgery. There is a lot of negativity lately on the board, I don't like it either. I think, when life hands you lemons, get the freaking tequila and have a party!
Honestly though, we have all been dealt a rough hand to end up with surgery, but I'm happy with my choice! It's great, I went to a waterpark all day today, then I went out to dinner tonight. I'm going on a cruise in a few weeks, then to Nashville for a long weekend of partying :D There are lots of things that surgery allows me to do that I could never have done with UC, and I don't regret it for one minute. As a general rule I forget I even have the bag. I am usually too busy to think about it. I actually got to work a little this year, I hadn't had an actual paying job since 2004! I've been a stay at home mom, but this year I got to do some subbing at school. It was great to bring home a paycheck, even if it was only 400 dollars! But even when I'm not working at school, I'm helping there. I'm off topic, but I am saying this to show all the reasons I am happy with my bag, and all the things that it has given me back. Even the small things, like jumping out of bed in the morning and leaving in 10 minutes make me happy now!
ep49 you mentioned waiting on the miracle cure that will show up. Over 6 years ago I thought the same thing, actually over 14 years ago when I first got sick I thought the same thing, but so far I haven't seen a miracle cure.
Good luck!

My ileostomy is the best thing that every happened to me. I've had it since I was 10 years old (and yes, I was waiting for the miracle cure way back then too) and tonight I'm off to my 30th highschool reunion. Tuesday night I'm off to the P!nk Concert. Without my ileostomy, I'd be doing neither of these things, let alone enjoying them :)

Shaz032 said...
My ileostomy is the best thing that every happened to me. I've had it since I was 10 years old (and yes, I was waiting for the miracle cure way back then too) and tonight I'm off to my 30th highschool reunion. Tuesday night I'm off to the P!nk Concert. Without my ileostomy, I'd be doing neither of these things, let alone enjoying them :)

Shaz, I have never told you this, but you are such an inspiration to me.  When I was looking for help

with deciding on surgery, your name came up frequently here and on other boards.   You have

helped so many people through sharing your experience.

Have fun at your 30th reunion.  I went to my 40th last summer and just one year prior I would not

have been able to attend, no way...no how.   I had a wonderful time and not a one of them knew that

I was pooping in a pouch the entire time.

And, P!nk?  Enjoy !!! I am almost 60 and I would love to see her.  My 13-year-old granddaughter

helps keeps me young and up with today's music makers.

Hi ep, like a couple other posters here my stomas are temporary because I'm working towards a j-pouch, but I did strongly consider keeping my end ileostomy after the first surgery because I was so happy with the ileostomy lifestyle.

Just to give you an example of life with an ileo... Yesterday I got up, took a shower, ate breakfast, and took the subway to work. I did my work, running around the office, going up and down the stairs (no time for elevator!), and ate lunch in the cafeteria with my coworkers. When the day was over, I took a long walk through the park with my friends, went to a museum exhibit, had a drink, went to dinner, then took the subway home. I was away from home for about 14 hours straight! This morning I woke up, took a shower, and changed my ostomy appliance (I change every 2-4 days, honestly at this point I pretty much just change depending on when is convenient for me, I know the next two mornings will be extra busy so I changed today) -- it took about five minutes.

So as you can see... except for the fact that I took an extra five minutes to change my appliance this morning... everything else about my life is pretty much just like it was before surgery. Actually, more like before I got sick, because before surgery I wasn't able to do ANY of the things I described above!

There is definitely a learning curve associated with having an ileo. I've got my routine down and it takes me about five stress free minutes to change my appliance nowadays, but a month ago I was so frustrated doing it that it made me cry! It's pretty much a given that the first month or two will be a bit stressful and overwhelming. It doesn't help that you'll be recovering from surgery at the same time, which can make your emotions a bit haywire, to put it mildly. But, especially since your ileo is permanent, you go through the "training period" and then for the rest of your life you're good!

I recorded a video a few months ago of myself doing my appliance change with my first stoma, you can see it here: /www.youtube.com/watch?v=26rpN2ECnQE. It's funny for me to watch because I've "refined my methods" more since then, but I think either way it goes to show that it is really no big deal... There's a bit of "arts and crafts" involved as you can see, but your WOCN will teach you and you'll have lots of practice with time too.

My quality of life is very, very good. To be quite honest, I had my period this week (after a long time of not having it due to health and stuff), and it was a lot more uncomfortable and difficult to deal with than my ostomy! My ostomy doesn't prevent me from going for a run, riding my bike, going to the beach, etc, but I had to take it easy this week because of my period. So, not sure if you're a man or woman, but if you're a woman maybe that it will help put things in perspective

ep....so many posts to go through that will give you a lot of information.

It is not a decision to be made lightly but when the time comes you know it.

As already stated the stoma has literally saved many people and also given them a better life.

In my husband's case he finally decided to have the surgery as he basically lost 5 years of his life due to UC that just could not get under control. Certainly there were times in that 5 years when things were manageable but more often they were not. The frequency, urgency, pain, bleeding and medications and the stress and toll it was taking on him (and me) are all behind us now. It has been 2 1/2 years and fortunately he had no complications, healed and recuperated well and after a little trial and error he found a system that is very dependable for him.

There is no guarantee how any one person will recover but you certainly can improve your odds by making sure you seek out an excellent surgeon (usually a colo rectal one although there are some fine general surgeons too). Definitely do your homework and make sure you are having a highly qualified skilled person performing your surgery.

Also regarding stoma placement...you will hopefully have the services of a WOCN you will meet with before the surgery. Be sure to wear your favorite jeans, slacks or whatever so the nurse can measure accordingly is also a very important piece of the "stoma puzzle"

Good luck to you.

That's just a page of links, mostly leading to old forum posts. It's not a group or anything.

Look, most of my posts about hating the stoma are exaggerated for effect. At this rate, I'll be making out like the stoma is worse than world war I and world war II combined. I don't like the stoma, but I deal with it. There's much worse afflictions I could have and I hope to heaven I never have them - if not least because I don't think I could bear arguing with another community.

More than I resent the stoma itself I resent people's attitudes towards me on this forum. I have been condescended to, looked down upon, and patronised from almost the very beginning. Because I am depressed and realistic.

I have a immune disease and it caused severe colonic inertia for many years I asked my gastro if I could have a bag , I was so fed up of him giving me more laxative bowel preps I changed to a new gastro and when he saw my history suggested a temp ileo , my life was transformed immediately and I felt fantastic for four great years with my stoma an pouch but I developed a mega toxic colon and a total colectomy with end ileostomy was performed 10 months ago since then I have had a lot of complications ( mainly because of my immune disease )and so many hospitial stays i have lost count
But I would do it again in a heart beat my quality of life has improved tenfold my only regret is not changing gastroenterologist
Fifteen years ago as now my immune disease is severe can't work or do a lot of things I used to buy at least I don't have to worry about goingto the toilet anymore .
Good luck and don't be put off by negative posters I'm another stoma lover how could I not be when it's given me so much freedom again .
All the best lucky lass