Feeling Less Positive

I would give it more time.  I am almost 6 mos. since takedown and I get uncomfortable, though not with the urgency  when I need to go, especially if I wait a little while until I can get to a bathroom.  I don't get up anymore during the night, unless I am away and my schedule is off or I eat out, and I don't have any night time leakage, which I had in the beginning.  I also take 2 Immodium before bedtime.  Definitely still figuring out what foods affect me, but trying not to get too stressed about it.  As far as emptying the pouch, it has gotten better.  I had the same issue as you.  My surgeon also recommended Benefiber or Metamucil Clear to help with thickening.  I take it once a day at breakfast.  I found that what really helps me is to do Kegels (about 10)on the toilet when I need to go.  It gets me to do the exercises and I am also taking my time and not rushing.  Weird but works for me!  A physical therapist I work with suggested it.  Hope this helps! Take care!

Chris

That's 10 sets of kegels!  

It takes time. What you're experiencing now is very normal, especially just 3 months after takedown.

I've had mine about six years. I still feel like my body is adjusting at times. It took me about a year to get comfortable enough where I could hold a job. But, I can't remember the last time I slept more than 5 hours straight.

Definitely bring your concerns to your doctor. Especially now, your body has a lot of adapting to do. Keeping some simple records helped me understand my body better and helped with doctor appointments.

CTB,

Are those the exercises when you pretend as if you're holding in urine and can feel the muscles tense up in the anus area? I'll give it a go over the next few days. 

Griffn,

Yeah it takes time but I'm just going through a sticky patch where I'm feeling down most of the time. Glad to know it's normal. Did you experience urgency?

I saw my consultant the other day and he's happy with how things are going, in terms of number of visits to toilet, etc... 

So at what point did you begin to really notice an improvement in your recovery and adaption to your pouch?

Honestly, I've never stopped experiencing urgency. In an average 24-hours, I use the bathroom at least 10 times. Sometimes it correlates with eating. Sometimes it's just my body hating life.

 I had my surgery at 22. Most young people - I think - heal and adapt to a much better norm. Every week I expect at least one 20+ bathroom visit day.

All improvement for me has been gradual. I've had a few gastros just say, "This is all we can do." Where I live, my options are perhaps more limited. For example, Lomotil isn't legal.

My attitude now is more geared to accepting and mitigating whatever is my current norm. For me, that 'optimistic' inclination to believe there's always an answer has become an imposition. When things are going badly, I've had to learn how to not blame myself - shut down ruminations of angels on pinheads and accept this is the best I reasonably have now.

It sucks. Also, I have no reason to assume your body will be so uncooperative. That's fantastic if you hit an acceptable level of normalcy. Though, I wish at least once doctor had tried to prepare me to cope with consistent frustration, pain, fatigue, and all the mental noise that comes along.

Yes, those are the exercises.  I do 10 each time, hold for 10 seconds, and relax, then hold again for ten seconds for a total of 10 repititions.  I've been doing them since just after my first surgery.  I also do keep in contact with my surgeon if I have questions between visits, usually through e-mail and he gets back to me quickly and will answer any question I may have forgotten to ask him at a visit.  Not sure when your next follow up is but I typically write down my concerns before seeing him.  If something is important, or really is concerning, I will call.  Good luck!

Sorry to hear things aren't going as well as hoped. I remember replying to a previous post of yours and saying the takedown would be a walkover. So that was probably stupid of me as everyone is different. I was lucky things went very well for me almost from the start but for most people, there is a period of adjustment that has to be made so you do have to give it time. It's definitely too early to pass judgement on the pouch just yet.

Re the urgency: a guide I was given said as a new J poucher you have to try and force yourself not to rush to the loo immediately. Obviously you know best and if you've really got to go, you've got to go - but the idea is to resist that initial panic and hold it for a little while until the pressure goes away, then you get that confidence boost that "yes I am in control here". Kegels would help you to do that. It's remarkable the power of your mind to make things worse or better so you have to learn to not stress yourself in this situation and then your body responds better too.

As for incomplete emptying of pouch, this is also fairly common. An easy trick is to stand up for a minute after you've finished and then sit back down again. This helps me get any last remaining stuff out.

Good luck.

The other thing I found in the morning is that I will empty my pouch as well as I can, take my shower and proceed to empty again.  I do wait it out a little before using the toilet, sometimes because it is not at a convenient time; shopping, working etc.

Hello, Jordysimo. See if this will help complete the emptying:  when you are on the toilet, lean back gently, as if you were reclining on the sofa, and just rest that way for a minute. That seems to straighten the j pouch. If you google for side views of the j pouch you'll see that it is curved slightly to fit the body.  So leaning back, or even standing up as others suggested, seems to lengthen or straighten that curved section and you might feel the flow. Just make sure you don't rest your entire weight on the toilet tank! This worked for me every time. I don't need to do this except on rare occasions. My j pouch seems to be working fine, 5 to 7 BMs in a 24 hour period. My reversal was nine months ago. In the beginning it was very, very difficult (frequency, Burn, pouchitis, leakage, and Burn). I hope it gets better for everyone. Attachable bidet for the toilet (take it with you if you move!), and Zincofax for babies saved me.

Jordysimo.... Im in a similar position to yourself. im 3 months out from my reversal, and like you things are fairly good with regards to frequency (5 times a day ..ish, but i wake 1 or 2 times a night)

i dont really have urgency (i mean i can hold for hours), but i do feel like i always need to go to the bathroom.  For example i have just been to the bathroom, its feels as if i need to go again already, but i know i will be fine for another 5 or 6 hours at least... but the sensation is always there...nagging at me and this does get me down a bit too.

It makes me feel like i cant squat down or bend over, even though ive not had any problems.  Occasionally i get a twinge that feels like urgency, but then passes.   I know the more frequently i get those twinges, the more urgent the situation is.

I know if i hold too long, something strange happens, perhaps the pouch overfills or something.  I can empty the pouch but shortly after (10 or 20 mins) i get a feeling of urgency which i think is the pouch refilling (presumably its the food that was held  higher up the pouch that i couldn't move by straining)  but again i can hold if required.

The point is im constantly reminded of my need for the bathroom, i console myself that im doing good, but i can sympathize and relate to what your are saying.  I hope that the 'nagging' will ease in the coming months as 3 months is quite soon.

Regarding emptying, i find what going on all 4s and sticking your bum in the air, or leaning backwards towards teh tank of the toilet while seated does help.  The kegels sounds like a good idea... i will try that.  Failing that dip your rear end in warm water or lean against a radiator.

Thanks for the comments, everyone. I took on board a couple methods and leaning back really does help get things moving. I also bend forward on the toilet and put my head between my knees which also helps. Just like Bobish mentions, I also get off the toilet, but ten minutes later I'm feeling the need to go. Hopefully this will eventually disappear once my urgency settles.

I can cope with certain urgency for hours but it just puts the thought in my head that I need to be near a toilet at all times. Urgency gets strongest at around 8-10pm when my pouch is most full but I'm doing my absolute best to hold on for so long so that I can empty more when I go to the toilet. Hopefully this urgency does disappear... I don't actually know what it's supposed to feel like when you need the toilet to be honest. I've only experienced urgency.

Another question regarding frequency. What exactly should be the frequency of my stool? I am still taking Imodium but it's been reduced due to it being too thick. Most of my stools have been coming out in small, formed pieces, but tonight it was a bit looser and slid out nicely but it looks kind of semi-formed. Just hard to judge if it's too watery or not...

Urgency/feeling uncomfortable, for me is also usually between these times as well.  Once I give into it, I am good for the night.  I also take 2 Immodium around 10:00 and usually good until the next day, anywhere from 11:00-2:00, depends on the day.  My frequency is higher the latter part of the day.