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Posted 9/19/2016 7:23 PM (GMT 0)
Hey guys,

Just got home from 6 days in the hospital after my Step 1 of 2 for my JPouch surgery. Things have been interesting to say the least. It is very different living and there's definitely a crazy change. I'm freaking out about leaks and I must say the smell when emptying the bag is horrendous to say the least. Can't wait for the reversal.
Posted 9/19/2016 7:56 PM (GMT 0)
There are odor eliminating drops that you can add after each emptying. They do help but not 100%. Things do get better over time.

If it is a lot of liquid output there are gel packs that you can add to absorb some of the liquid. You probably have a loop ileo so I'm guessing it's mostly liquid output. My loop ileo was rough but there are some tricks to making it more manageable. I liked the convex wafer because it gave more support to my ostomy. Maybe an ostomy belt can help you too.
Posted 9/19/2016 8:31 PM (GMT 0)
The loop is really difficult - but yes, the odors can be terrible. I bought some spray and my insurance covered it. It really worked well to mask odors, but the smell of the spray itself was pretty awful. It was tough, especially with a loop. The end for me was much easier, the output was easier to manage and I'd NEVER have a leak. My loop only got 24 hours before I needed to change the wafer, and that's if I was lucky. I think in your case, focus on healing, do your best, 8 weeks will pass quickly.

I forgot to mention, what you eat has a big impact on the odors. If your eat something smelly, the output is smellier, like fish for example... smilewinkgrin
Posted 9/20/2016 12:08 AM (GMT 0)
Yeah, the loop ileo is the pits. You will notice improvement along the way though. I counted the days until reversal....I had a tough time with my ileo. (More physically than mentally). Congrats on making it through the first op. :)

PS - in case they didn't tell you....its normal to pass mucus and even some stool from your bum. You may feel and urge to "go". No one told me that and when it happened I freaked out!
Posted 9/20/2016 1:27 AM (GMT 0)
Wishing you a good recovery during this step. I can well imagine a different life functioning/change. I hope it's better than where you were before.

Please keep us updated how you're doing.

q
Posted 9/20/2016 2:21 AM (GMT 0)
Good luck Bull! I hope your recovery will go smoothly and you will enjoy a nice UC free life.
B
Posted 9/20/2016 3:26 AM (GMT 0)
I have an end ileostomy and the way I think of the smell when emptying the bag is this .... no crap smells pleasantly fragrant, whether it comes from an ****** or a bag! Try to keep a sense of humour, think of how things have improved from the depths of UC, and focus on recovering.
Posted 9/20/2016 2:38 PM (GMT 0)
Yeah last night was rough. First night home. A lot of pain, I get up usually about once in the night to empty the bag and right now it's mostly liquid / slush quite the scene. When I woke up I found my boxers nicely soiled from leakage over night, I did try to "go" last night but I can't really push yet cause I'm so sore in my abdomen. It feels like I'm a folding chair just being pulled together, best way to describe it. Appetite definitely is not fully back yet for sure and I am absolutely terrified of a leak, not sure how I'd deal with it even changing the bag myself I'm scared of, haven't had to do that yet either. Good thing is my skin is really smooth and straight (I'm 25 and was in good shape) so the wafer sticks well and I should have less chances of a leak in theory. All in all, it's a big learning curve and rough road but it's definitely something that had to get done and I'm at least glad that the 20 minute PAINFUL BMs a couple times a day are gone. I appreciate the support.
Posted 9/20/2016 3:10 PM (GMT 0)
One thing i can tell you, is that I never felt comfortable with my loop. I was thankful to be done with UC, but I found the loop to be a real chore. It was a big contrast from the end (I had 3 steps). Even changing the loop was a hassle. I hope you have a home health nurse for the first few changes? It's actually really easy to learn, and the best way is to dive in and do it yourself, but with the loop, mine never stopped outputting, not for a second. I had a nurse for my end ileo - they offered one after my loop, but what's the point at that time? I already knew how to do everything and I just wanted to be independent.

You're at the hardest time right now, just had surgery, still have pain, tightness, don't know exactly what to expect. it's scary. It gets much better. You will learn that loop and you will be reversing before you know it. My stomach is actually flat too. That helps with applying the wafer, but I had leaks caused by a short stoma and the fact that it would recess below the wafer at times... even if i wore convex. You only have 8 weeks so I wouldn't worry. Do your best tongue
Posted 9/20/2016 11:17 PM (GMT 0)
Don't push, just let it go naturally. You're really not supposed to push TOO hard with a j-pouch.

It probably means that you were sleeping really well and were relaxed, that's why you had leakage. I wouldn't worry about it too much, this is only temporary.
Posted 9/21/2016 12:26 PM (GMT 0)
So last night I had so much leakage I soiled my first boxers, changed them soiled my second, changed that soiled my third and after just gave up and slept in my soiled boxers on a hospital pad as far as I could and had more discharge this morning and all throughout the night. How did y'all deal with this? Wear depends to sleep?
Posted 9/21/2016 2:16 PM (GMT 0)
I didn't have an issue but it is very common. You could ask your surgeon for some suppositories to treat your rectum (inflammation) if that is the issue otherwise your body will adjust over time.

I'm a horrible sleeper.
Posted 9/21/2016 3:40 PM (GMT 0)
I never soiled anything either. I am a very light sleeper. I think one thing you could try is setting a clock for every couple hours for now, to see if you can go to the bathroom ahead of leaking. It's hard because you just got out of the hospital, so I am sure getting up and down is not that easy at this moment. Also, if you're on medication, it can cause you to sleep heavily. I stopped taking all pain meds the day I left the hospital. I have a bad reactions to medication.

He is having 2 steps Keith, so his rectum should be gone already. The stuff coming through your jpouch, is likely from the lower part of the loop I think, output that passes by? Are you passing liquid Bull? I remember my surgeon saying I could do a fleet to try to get it all out. I didn't have a lot of problems with using the bathroom between steps - but a lot of people find it to be inconvenient. I went once in the morning and got it out and then I was generally OK. i wouldn't try anything - like an enema without asking your surgeon. You're still so soon out of surgery. Best to let things heal before doing anything.
Posted 9/21/2016 4:00 PM (GMT 0)
I believe my surgeon said he left a tiny bit of the rectum in if I'm not mistaken. I don't have any problems during the day, just when I sleep it seems. Depressing that this doesn't seem to be a normal thing I guess even though my doc and ostomy nurses warned me about it. And yes, it is only mucus it seems. Just a lot of cloudy liquid.
Posted 9/21/2016 6:42 PM (GMT 0)
It is totally normal from what I read. I remember being really scared it would happen to me. I think what he left is called a "cuff" it's just a small piece that the pouch is connected to. I am sure you are 100% on schedule with healing, it just takes time. As I said, pain medication can make you sleep VERY heavy. I get up ALL the time - I never sleep well at all - never have.
Posted 9/21/2016 7:53 PM (GMT 0)
I'm also coming off pred (at 15mg, was at 15 before surgery they bumped me back up to 20 for 3 days or so back down to 15 now) so that could also cause withdrawal and tiredness. Plus a 8 hemoglobin doesn't help. I'm definitely very tired.
Posted 9/21/2016 9:30 PM (GMT 0)
Well done on getting through it thus far!! it can't be easy, but I am sure you will start to feel better with each day as things start to settle down. Let us know how you get on.
Posted 9/22/2016 11:40 AM (GMT 0)
Thanks Poppie. It sure isn't easy. It's also depressing being 25 and having to wear diapers sleeping because I'm soiling myself at night. It's also not easy mentally having a bag, again very depressing. I can't wait to be reversed and hope all goes well.
Posted 9/22/2016 11:53 AM (GMT 0)
And this is why j-pouch folks aren't the best qualified to give an opinion on permanent ileostomies. Many of them have a crappy loop ileostomy for two months that they are counting down the days to be rid of. It is a steep learning curve getting used to a bag and it can take anything up to a year (even longer if you're me). But for the vast majority who do have a permanent stoma, life is not like this at all.

@Bull101 - Haemoglobin of 8 is extremely low, particularly for a male. Ask for an iron transfusion, if one isn't already scheduled. Oral supplements won't be sufficient to treat anaemia that severe.

Best of luck, and hope the reversal goes well for you when you have it.
Posted 9/22/2016 12:33 PM (GMT 0)
NCOT I agree. I talked to an ostomy nurse who had a Jpouch and went back to a perm ileo cause she had crohns after 4 years and she said she just ran a Spartan race no problem. But this temp loop is brutal and it's also only been a week for me so I can't be a real judge or opinion on this yet. Just saying for me so far, it's tough that's all. As far as that hemoglobin, they won't give you a transfusion if you're below 8. I've been at 8.9 for the past few months, at my surgery I dropped to 6.9 which is when I did get a transfusion. We'll see how it progresses.
Posted 9/22/2016 3:20 PM (GMT 0)
Bull - No worries. You have every right to find it tough. In fact it sounds horribly tough and I hope it gets better soon. I only had an end ileo, so I can't comment on a loop one from personal experience. But it sounds much more brutal, at least initially. Your bowels would eventually adapt, even with a loop, but obviously for a permanent stoma it would be much better to have an end one.

That's ridiculous about the transfusion :-/ I was in a bad way whenever my haemoglobin was as low as 7 or 8, and I'm female. Iron transfusions always fixed me right up. Far better than oral iron, which I could barely tolerate anyway. Think you need to fight that one, but not sure of the best way to go about it.
Posted 9/22/2016 4:19 PM (GMT 0)
I had the end ileo for 3 months, and even in that case, I can say that I don't have a full picture of what life would have been like if i had it longer. The end ileo is so much easier and better, way less emptying, less output in general, better consistency, slower transit, no leaks, less noise, didn't need any special rings or products. Mine was a slam dunk pretty much. Convex wafer with no extra anything. I didn't even need to powder, just slap the wafer on, attach pouch and go. I only had to change the wafer weekly too, it held up perfectly - I could have pushed to go longer I bet. The reason I don't have a full picture, is because, the amount of time I had it was too short for it to really "settle". I had it easy with mine and it was just 3 months. I bet if I had it a year, I would have been able to empty even less. I also had my rectum so I had some issues with using the bathroom. Mine wasn't in bad shape at that time, I got lucky, but many UCers who have 3 step deal with pretty intense symptoms between steps 1 & 2. I was lucky. I probably experienced ileo life more than most people due to the fact that my proctitis was behaving (funny because it NEVER behaved - nearly the entire time I had UC my proctitis was nonstop).
Posted 9/22/2016 7:38 PM (GMT 0)
I know they won't do a blood transfusion unless you drop below an 8 but you could ask for iron infusions. I get them periodically. The one I get is called Injectafer. It works great at bringing my levels up. It's two infusions done as an IV push (not drip so it's fast) 1 week apart.
Posted 9/22/2016 8:21 PM (GMT 0)
If surgery was an easy cakewalk then it'd be a first line treatment for everyone. It's tough, but so are you to make it that far, so hang in there for a bit longer and things will improve. Yeah, loop ileos don't get good reviews (they suck) but at least it's a temp thing with an end in sight. I'd contact your ostomy nurse and describe your troubles. Perhaps they have some other waffers, appliances, and other products that might give you some relief. Even could adjust your stoma if it's just plain sitting wrong, who knows, I'd ask just to see if there's a better solution and verify nothing is wrong.

I bet in another few months you'll be out there enjoying yourself free of uc, and laugh when reflecting back on today :-)
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