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For The Others With A J-Pouch... A Few Questions!

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Ulcerative Colitis
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Posted 7/1/2011 11:50 PM (GMT 0)
Hey all,

I just had my takedown surgery on June 13th, and while I felt great for a few days after, things have been steadily declining since then. Some of you might have seen my post about my emergency colectomy, and it has taken 2 more surgeries for me to have my j-pouch completed.

Also, YES I have seen my doctor, but she doesn't have much to say about the pain and stuff besides to wait it out.

A few questions:

1) How do I ease the constant pain in my, er, bumhole? (Sorry TMI but there is no other way to say it!) Some days it is worse than others but there is always this pain that is throbbing there. My doctor gave me some lidocaine ointment which helps some, but it seems to rub off fairly quickly.

2) What can I do to make it stop BURNING when I go to the bathroom? Seriously it hurts so much I want to cry. Apparently I have a tear on the outside which is making it worse and I am using a prescription ointment for that, too, but it's not going away overnight.

3) Farts? Sometimes I get a lot of gas when I am laying down, and when I go to the bathroom they float up I guess and come back to haunt me when I try to lie down again. I'm scared of just "letting them rip" because I'd rather not soil myself.

4) Incontinence at night. I don't have it too bad but I do like to wear something as protection. Right now I am using period pads but they are bulky and uncomfortable and I'm afraid I am going to "miss" them and soil the bed. Is there any kind of special bowel incontinence pad that is better fitted for my needs? I went to CVS and could only find pads for bladder incontinence.

5) Lethargy. I know I need to drink (and eat) more since whenever I stand up I go blind for a few seconds. I've been trying to drink a ton of gatorade to help with that but in general I feel like I have no energy. I know my surgery wasn't long ago but it is so frustrating! Just walking around the block tires me out, and I feel like crap until 3 PM nearly every day. I even get nauseous and sometimes vomit in the morning, though I think that is due to dehydration.

I just want to feel like a human again!

Thanks in advance for your help!

-Kelly
Posted 7/2/2011 4:04 AM (GMT 0)
Kelly....you are only a little over two weeks post surgery.

It is good that you have spoken with your surgeon, as you should with any concerns, but I would assume that her answer of waiting it out is the right one. At two and half weeks my son was still in the hospital. Your body has gone through so much and it needs time to heal.....it is a slow procedure. The lethargy is there for a reason and you should listen to it....it is telling you that your body needs to rest to heal...do what it says! It is very important to be up and active but when the lethargy sets in it is time to take a nap.

As for the incontinence....that should slowly get better and better. We just put a towel on the bed and any little leaks were very easily dealt with.

The pain, burning and gas problems will continue to get better and better over the next couple of weeks. It is very important to keep the area very clean. Dillon used premoistened flushable wipes and then air dried (no wiping with toilet paper)...it helped a lot to alleviate the soreness.

For now, just take it a day at a time, get up and be active but when you feel tired listen to your body and rest. You will continue to get better and better and soon will have forgotten (almost) what this was like.
Posted 7/2/2011 6:22 AM (GMT 0)
i have a perm ileo, so i can't answer most of the questions, i suggest you post on the ostomies board. But i can help with number 5.
Things like gatorade, juice, soda, tea can make you more dehydrated! the high sugar or caffeine content can make you go more! So it's best to stick to water and eat some salty foods! Or if you can stand it, some pedialyte, or put some salt in water. I know you will hear different things, but if you think about it, our bodies have water, not gatorade, or koolaid or juice, so plain water is the best way to go to keep hydrated. And However if you are that far gone with dehydration, you need to go get some fluids, once people with ileos/jpouchs get dehydrated it's hard for us to catch back up. For instance, if you should get a stomach bug, go on to the er or the dr and get some fluids. But really it's best to stay on top of it!
I hope suebear comes by and sees this, she will be able to help you a lot, she's a wealth of info on jpouches!
i hope you feel better! And i agree with the resting!
Posted 7/2/2011 8:53 AM (GMT 0)
To be fair 2 weeks after major surgery like that I can see many of these things being attributed to that. Your body needs to adjust and get used to this as well as other things, it's not like a walk in the park! I'd have patience but at the same time inform your doctor of these things especially the pain as you shouldn't be suffering and they should be giving you something a lot stronger, just inform them the pain killers your on aren't working and ask for something more powerful such as an opiate based drug... dihydrocodeine, oxycontin etc etc these are great for pretty severe pain relief, and as they are time-released it's good before you go to sleep to get you a good night sleep.

On the lethargy, again your bodys been thru a war and is still repairing itself so to speak it will improve week by week... Gatorade won't do much just simple carbohydrates. You could try something more caffeine based stimulants, maybe even try pre-workout supplements.
Posted 7/12/2011 3:01 AM (GMT 0)
Thanks everybody!

I got some cream for tearing and stuff, which seems to help on and off.

Right now I am bleeding PROFUSELY from the rectum and I have contacted my doctor about it but she hasn't gotten back to me yet. It is quite worrisome. :(
Posted 7/12/2011 11:53 AM (GMT 0)
Hi,

I have a jpouch and can say that I don't really have any of those.  Since you spoke to your dr, it sounds like it's just an adjustment period as I do remember having issues initially.  I will say that the only thing I do get is a bit of leaking sometimes during the day (depending on if I eat stuff to make the output more liquid).  It sounds gross or strange, but I tend to just put a bit of toilet paper in the end, just in case there is a touch (ie. otherwise, I'll get  a rash).  So you could try that at night. 

I agree with others about the fatigue.  It's only been a short time and so of course your body is tired.  Once you're able to eat properly, etc, you should get your energy back. 

I don't tend release gas except when I go, and would think the buring and pains should subside.

Good luck to you.  It is an adjustment, but nice to get rid of the bag isn't it?

PS - Just read your last post above mine.  Let us know what the dr says about the bleeding.

Posted 7/12/2011 4:39 PM (GMT 0)
Calmoseptine ointment works great for the butt burn. All this will improve over the next few weeks. The gas pains will get better too.

You should not be bleeding a lot from your rectum. What did your dr. say about this?
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