Ok…so remember my Bag Buddy the one that was suuuper lucky to have #2 and #3 combined. yea well..now hes miserable. Getting up 7-8 times a night to go to the bathroom, clear liquids still, pain, nightmares, and a diaper. Uhm…no. No no no no no. I am so effing happy these days, I am actually kinda mostly sleeping again. I do not want that. I’m freakin out here. No for real. I do not want this life
I have been SERIOUSLY considering keeping this bag. WOA WOA REWIND. WUUUUUT?
I know, right. Me, Jackie, Queen Anti Bag, is HIGHLY considering keeping it. I hate this thing, its gross and ugly, but you know what? I’m happy. I’m healthy (except that I’m fat and weak), and I’m living life again. I’m stoked with the way things are going…and I do not want to eff that up. There is no way I want that life again.
I mean I read about people a year out who are all “I still have some leakage but everything else is good”. I’m sorry but a leakage here or there out of my bum is NOT OK. Someone tell me its worth it? Someone tell me that it all goes away, or that everyone’s story is not like that. Someone tell me they are just as happy if not happier than when they had the bag.
Tell me that this won’t be a 4 part surgery 1,2,3 to get the Jpouch and #4 to go back to the bag.
Jesus.
All of you newbies out there, FREAKIN out about getting this bag…I was you too, for realises go back and read my blog. And I am TELLING YOU! I am waaaay more terrified of diapers and butt leakage than of this thing. I would rather do this for the rest of my life than worry about shitting my bed.
Everyone’s story is not like that. I had a surprise combo Step 2 & 3 myself, and I did not have those issues. My life is better now than with the ostomy (which was FAR FAR better than with UC).
I wish that I could tell you what is in store for YOU, but no one knows that. That’s a risk that you must be willing to take, and only you will know if it is worth it to you to try for a pouch.
I was not a candidate for the J Pouch surgery- I went into the surgery knowing I was going to come out with a bag… I was very angry the first several weeks (we got ours around the same time). But, after reading up on all of the accounts of the J- Pouch, I am so glad my doctor refused to do it! Having an ostomy SUCKS ASS, (literally and figuratively), but atleast I am not attached to the toilet 24/7. 🙂
It seems like such a toss up! So many people LOVE their jpouches…so many have problems. It just freaks me out…a ton.
having the bag was the lowest part of my LIFE. after the surgery, you will be attached to the toilet while you get used to it and may have a leak here and there, but after that, take VSL #3 a GREAT probiotic and keep a good diet and you will only go 1-3 times a day. I rarely get up at night and no leaks.
this is a MAJOR surgery, your body will have to get used to it.
ONWARD!!!!
Have you discussed this with your surgeon? If your quality of life with a jpouch is lower than with the ostomy, he should be able to give you back the ostomy. I was leaning towards the ostomy for the same reasons you are (screw da butt leak, let the bag catch it), but am now considering a jpouch. If the pouch doesn’t work I can go back to the bag. I can wear depends and put on a bed cover to catch any night seepage, which I believe is generally infrequent and goes away after a few months.
Yea I know he can totally do a reversal. Thats not problem. I just feel like I need to take the risk with the pouch but at the same time…ugh screw anal leakage. I mean right now I can be away from my house for just about forever. When it comes to the pouch?….prolly not. Ugh…
The whole thought of depends in my future at 25, is like…ugh . whatevs.
Yeah, I hear ya. These aren’t easy decisions, are they? Hang in there; you’ll do fine. 🙂
Just wanted to let you know how much I’ve been enjoying your blog. Yesterday I met with my surgeon to discuss the j-pouch surgery, so of course I’ve been scouring the internet looking for info. I had a subtotal colectomy last year after living with UC for 17 years (I’m only 37). I had a stricture in my intestine that drove me to surgery. They found cancer in the stricture and I enjoyed a lovely 6 months of chemo. I was on a 5FU regimen…I don’t have to tell you what the FU part really means. 🙂 Just kidding, it wasn’t as bad as it could have been. Anyhow, I was doing fine until the UC decided to come back in what was left of my perfectly happy remaining colon. So now it’s back to surgery. I’ll have the two stage j-pouch surgery beginning in late June/early July (I’m still in the process of deciding the “drop colon date”. Your blog has been very helpful and I love the humor you bring. And just to let you know, I too suffer from auto-immune fun. One of my many docs calls me his “weird one.” In addition to UC I was given the honor of Interstitial Lung disease or what’s sometimes called BOOP and the precursors for Primary Sclerosing Cholangitis. So not only do I get the bathroom sprints but I also get the fun of coughing, spitting up gunk and sucking on an inhaler when my lungs feel like filling up with mucous. All in all…it is what it is. I’m fortunate to have a wonderful husband and two very energetic kids who keep me busy and fulfilled. And like you I try to find the humor in it all. So please Blog On b/c I’m enjoying the laughs. And…I too worry about ‘seepage’…gross.
God Bless.
Ugh Linda, that sounds like a barrel of suck. Seriously. I hope your surgeries go well…where are you having them?
Ugh. Anything that has a possible side effect of anal leakage would give me serious pause.
And, I dunno, you do sound really happy. I say if you are happy (or content) with the way your life is now, then let that be your life. Or give it time. Do you have to decide about the other surgeries right now? If there’s no need to rush, then don’t.
I know having a crap bag isn’t ideal. But it’s better than wearing a diaper. Or having to run to the toilet 8 times a night praying you’ll make it. Or having rubber sheets like you did when you were 3 just in case you have an accident.
I want you to be happy. So, don’t do this if it threatens your happiness. I think the mere WORRY of what COULD happen is a threat to your happiness.
I know it’s always easy to say what you would do when it’s not you in a situation, but I’m like you, and I would NOT want to have to worry about shitting myself. So, I’d probably learn to love the bag and live my life. Love ya.
I dont know. I’m pretty torn. I’m totally content like this, but the idea of not toting around a bag of poop is pretty tempting. but poopin’ the bed and going like 18 times a day (no joke) just seems like an UBER downer. Meh, I’ll prolly do it..and if it blows..ill have it reversed.
So I had my reversal on Tuesday and I am only getting up 1x per night and having no leakage. I am sore and it burns occasionally. But it is worth it. I think it is all a personal decision and you have to remember everyone’s body is different. I had to empty my bag like 15 times a day. So I thought for sure I would have issues with my pooper working again and it has been quite the opposite. Good luck on your decision. It is only yours to make!
Its good to hear that stuff. Did you have a 2 or 3 step? I only empty between 4-6 times a day and I use the small bag too. I just wonder so much about control over it all. Especially because even though it will be hooked up again…like..its will be different than before…not as bulky…I really dont want to poop my pants….again.
I had 2 step. I used the regular size bags too. I am still so sore but It has been overall good still no leaks. I am going only 9-10 a day. Which is good b/c I was so prepared for 20x. I feel you, I fear pooping my pants but me and my bag had some major issues and there were plenty of times it leaked all over when I was in public. I had one day where I went through 15 bags…it was all I had, they just would not stick. Of course it was a Friday night so I manage to get one half ass on to sleep like 4 hours and went with a naked stoma to the ostomy supply store. I finally got them to stick then my 2 piece system decided to start popping open and leaking…so for me the bag was just as bad as pooping my pants but instead of my pants I pooped my shirts…I swear the whole think stinks. Good luck!
I’m having my surgery done just a little north of Atlanta, at Northside Forsyth Hospital. That’s where I had my first subtotal colectomy. It’s a good hospital with great people. You take care and I’ll definitely keep reading your blog! It’s great!
I had my colectomy in July of 2007, and have had every surgical complication and infection in the book at one point or another. I finally had my last take-down in December 2008, and am totally happy with the J-pouch! There was a little leakage at first (meaning the first couple weeks, when I was in and out of the hospital anyway), but now I hardly even think about the fact that I have a J-pouch.
I have found that if I eat a lot of high-fiber food (I have a thing for spinach salads) or soda before bed, then I do have to wake up several times during the night to go to the bathroom, but luckily I figured that out pretty quickly, so now that’s a non-issue. If I wasn’t an insomniac, I’d be able to sleep through the night with my pouch and be safe.
I was an “ostomy-phobe” the WHOLE time I had my ileo (a year and a half)…it constantly grossed me out, and I always had to have my hand pressed against my bag to muffle the noises in class and such (I’m 24 and in college). It is so nice not to have to worry about that anymore! And no more checking to make sure my bag hasn’t suddenly filled up and pooched out under my shirt–I wore my bag sideways as well, and had a cloth ostomy belt to cover the whole works up, but still.
Not everyone’s story ends badly–I finally feel like I’m a “normal” college student living the life I didn’t get to have for the 21 years I had a deformed, “sick” colon.
Mallory,
Its great to hear that your still happy with everything even with the complications. All the the stuff that goes wrong can really make it seem like its not worth it. Especially just thinking about getting better. Just know that from basically Oct-Dec of this year I’ll be recovering just seems like so much dang work to get there, it really makes me wonder why I want to do it. I have seriously considered staying with the bag but I know I’ll always wonder if I don’t try for the pouch. I suppose its best to just try for it, even though its a bit terrifying.
oh ps. I have a friend who had infections and problems galore after her colectomy, I should have her talk to you, I know she has questioned her decision a few times after all of her complications.
Jackie–
That would be awesome! I would love to hear from your friend. Luckily, I couldn’t question my “decision” too much, even with complications, because by the time I had the colectomy, my colon had completely died off and caved in on itself…it was basically 8 pounds of calcified dead tissue. I didn’t really have a choice but to have it removed, because my whole digestive tract was shutting down from the lack of nutrition and blood supply. The only way I got through all of it was by reminding myself that if I kept going with the surgeries, I’d eventually be rid of The Bag!
Nowadays, the remaining issues I have pertain to anemia (which has been the big problem lately…I have half the volume of blood I should, and my doctor can’t find any obvious cause for this), and muscle damage that’s still healing from last year’s post-op infection. Ironically, every time I go into the hospital now, the nurses don’t even ask much about my (remaining) bowels, or keep track of “output” or anything! Funny how that works out.
When is your next operation? If your takedown is in October, are you having more stuff done this summer before that?
Mallory,
I gave her your email address, I’m not sure if she will email you or not, though I hope she does. Wow.. calcified colon doesn’t sound like a load of fun. Holy crap.
See I was TERRIFIED of the bag. So against it, I’d prolly have rather pooped out of my mouth. But now..honestly…and I read people say that but I didn’t believe them. If I was stuck with this forever, I would be ok. It blows, and its really nice knowing that its going to eventually be gone, but honestly, life before was so much worse I would WAY rather be happy and enjoying life with the bag.
Next operation is August 25th. They are going in and creating the pouch, and giving me the loop ileo. Then take down in November. So its gonna be a crazy few months in there but fingers crossed that its worth it and that I don’t hate myself for choosing to do it!
I think thats the hardest part, is that I’m not at the “you’re gonna die if you dont do this” phase…so if it all goes wrong, its like I chose it all.
See, what really made things difficult when I first started discussing surgery with my Seattle doctor (right when I was being referred out there) was my mother’s attitude of, “Well, if anything goes wrong, don’t come crying to me, because you’re doing this to yourself.” This has always been her take on things; when I was growing up, doctors couldn’t for the longest time figure out what was wrong with me, so my parents always treated it like it was my fault. If I got sick from it, they’d tell me I must’ve done something wrong to make it happen.
The thing I’ve learned through the whole surgical debacle is that none of us “choose it all,” as you say, whether it goes well or not. Diseases like ours have been around forever, but in the medical field it seems that a lot of the treatment/complication possibilities are still new territory to most doctors. That is, the surgeon tells you what he/she hopes to achieve by operating, and by consenting, you’re just saying, “Yes, I want that outcome,” or even, “Yes, if it will save my life.” The doc can’t predict what will actually happen, since we’re all so different in terms of how our bodies react to surgery/meds/etc. If it all goes wrong, all you really “chose” was to do the best you could with what you had at the time (and if what you have is a defective colon or a bag of poo stuck to your tummy, that’s not much to go on, in my opinion!).
I hope this doesn’t sound preachy, because I don’t mean it that way AT ALL! That’s just the way I’ve tried to reason it all out in my own head to make it all more acceptable to myself. Every time there’s been a complication, I’ve asked the docs point-blank, “Did I do this? Was there something I should have done that would have prevented it?” Every time, they tell me that because my situation and reactions are so rare, there is nothing ANY of us could have done to predict or prevent the disaster of the week.
In your case, it’s good to know you’re not at a life-or-death point. 🙂 And from reading your blog, it looks like you can only get better if you go for the pouch–either it works, or, worst case scenario, it fails and you go back to the bag, which you seem to be already dealing with a TON better than I ever did!
Hey,
I came across your page here and thought I’d share this with you. I’ve found an ebook that tells this persons story about their journey with UC, j pouch surgery etc. The book is called A Date With A Surgeon, might be worth checking out before you opt to have surgery. Anyway just thought you ought to know. It’s actually a really interesting read too.
All the best health to you,
Hi everyone,
Tomorrow I will be discussing the j pouch with my doctor. I just found out I have ulcerative colitis. I’ve been suffering with diarrhea for over 2 yrs. I don’t know what the doc will recommend but I’m soooo effin nervous…..