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21 replies

am i expecting too much and am i over reacting?

G Guest
im about 3 weeks out from my takedown with zero complications so far. my days are great and i usually go once or twice but then around 9pm i start to go a few more times back to back and unlike the easy daytime bms i struggle a bit more to empty and of course the wiping starts the burning sensation and aggravates an existing hemmoroid i have. im starting to think my problem is in my head for example, as soon as its not perfect and comfy and i begin to have a bit of frequency i begin to panic. i start to moan and complain and tell my wife i cant do this anymore. im staring to think im just freaking out because it doesnt seem right to use a part of your body that was just created months before and any pain i feel i associate with damage etc. when my butt gets active i get some pressure pain burn discomfort that goes away by the morning every time. how can i stop this destructive behavior and just deal with it knowing that it will all be ok in a while when im not really sure it will? im not sure if what i saying makes sense but in a nutshell im not accepting any discomfort down there as normal and every night its the same thing. doom and gloom. i do take one low dose of dilauded every night to start winding down for sleep and usually get a few hours in after my back to back bms. i think my fear is causing me to avoid adding foods etc and has me napping a lot which is probably good because the first 2 surgeries i was way to wound up and lonely/fearful to sleep much at all cause we were far away from home. we just got home to ny last week to live with friends and family and that has put me in a much more relaxed restful state. it sucked being alone in florida during all these surgeries but insurance made it necessary to stay. can anyone relate to what im saying and give any encouragement? im feeling good and rested right now but when the night time bms increase along with the discomfort i fear ill be right back to the moaning and fear. i did cut out wheat yesterday and noticed some relief but i added a supplemental drink (isopure zero carb) http://www.gnc.com/product/ind...sp?productId=2929308 for my minerals vitamins an protein) but it gave me loose stool. i dont want to give up on it so easy because i know im not getting sufficient nutrition from playing it safe and eating just white no fiber startchy food., thats all my fear has allowed me to eat, i cant get out of the colitis mentality. can anyone relate to playing it too safe and letting the "normal" pain and discomfort throw you into a whining moaning panic? to explain it simply i feel like i just broke my arm and sliced it open but i have to keep using and abusing that arm. it just doesnt feel right. finally, ive talked to my surgical team at cleveland clinic and they all say that everything im explaining physically is normal regarding discomfort. i was told it can be very challenging but didnt prepare myself for the toll it would take on the intellectual side of myself (what? i have to poop acidy stool out my brand new rebuilt digestive tract?) i just cant wrap my brain around this...
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L liz11Member
tom. I am so sorry you are going through this. I think I felt similarly after my jpouch takedown. Can I suggest that you get in to see your GI doctor immediately? You could potentially have a problem with your jpouch which they could help you with. At my 3 week post op appt my surgeon told me it was all normal and threw me out of his offfice. I then went to my GI at the time and I it was discovered that I had a LOT of medical and functional problems with the jpouch. So the horror of how I felt, which was similar to what you are describing, and the anguish of "recovery" was not in my head.

Also maybe you can go see your GP to see if they can help with some of the mental issues of a tough recovery.

In the interim is there something you can do to distract your mind. Soak in the tube with some headphones on with good music. Try and get outside and go for a little walk. Or just sit outside if you are not physically ready for a walk yet. And are you doing all the little tricks that people say on this board with butt creams, sitz baths, etc..?

I wish you some peace and strength through this.
Epic ScotsmanEpic ScotsmanMember
It is a bit of a mental game as well as a physical one. Things need time to adapt and so, quite frankly, do you.

The frequency probably increases in the evening because that's when a day's worth of food is getting to the end of line, so to speak. By morning, everything from the previous day has worked it's way through and so you're working from more of a clean slate. I usually go 3 times in a given day, with a trip when I get up in the morning followed by one about 10-12 hours later followed by one before I go to bed (usually about 4 hours later). There's just more stuff in the pipeline at the end of the day.

As for adding new foods, I can only tell you my mindset on these things. From day one after takedown, still in the hospital, I was determined to make my pouch do as I say. Sometimes we don't agree, but I usually win out in the end (ha ha, bad puns). If you want something, try something. If it doesn't work, try it again later. A few months ago I had some beans and nothing good happened at all. 2 weeks ago I had some beans, no problem.

It's a long recovery process. I'm almost 7 months out and I know I'm not done yet. I will say, immodium does help. Also, my system seems to relax for a while if I'm doing something engaging and/or physical. I hope any of this rambling helps.
C chasingtime (Guest)
thanks epic and liz11,

well i was having all these issues to a lesser degree before my takedown when passing just mucus so my surgeon scoped and scanned everything with an a plus rating on a fully functioning and healthy j-pouch. my question was did anyone else make their recovery worse by being in their head and letting anxiety overwhelm them and exaggerate their discomfort. liz11, your reply is quite scary but i appreciate you trying to help. onward and upward with a positive attitude or im going to talk myself into problems. i am having a very good day so far btw...
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C CeeeeCeeeeMember
It is so easy for us to be absorbed (sort of obsessed) with our J-pouch for quite some time after having undergone all of these bodily changes. The suggestion to keep busy with "good for us" activities helps. It takes awhile to figure out what the new-us is all about. When we do, these little quirks in our daily living sort of fall into more objective realities. Hang in there! It is truly a journey!
fqfqMember
well, i think my attitude DID affect my recovery to some degree. Looking back (and you will probably get to this point too), I should not have worried so much, been overly panicky over every little twinge and tick, depressed, hopeless, and scared sh!tless basically... but at the time I WAS, and it is only easy for me to look back NOW and say how I should have done things differently.

the majority of us will end up around the same satisfaction levels with our j-pouch. it is like swimming against a current. we can either keep flapping our arms more and more fighting the current. or we can let the waves move us back and forth a little, keep forging, and not fight it too much. either way, we eventually arrive at the same point, so why arrive exhausted?

i've said this before in many of my posts, but had i just let my body do its thing, let it figure things out and adapt, let the healing and recovery go at its pace, i still would be where i am now today (maybe sooner). i think i was my own worst enemy in my recovery.

now, here is what I am doing to make up for it. I get massages every now and then. i walk A LOT. i make sure to see my friends several times during the week. i laugh at myself and my pouch, even after i cry. i first get grumpy at the pouch for acting up and i get into the old way of thinking: "did i do the right thing"? But i don't let myself stay in that space too long. later that same day, i make a joke about it, how my a$$ is on fire and I gotta extinguish it pronto.

but, actually... don't kick yourself too much for thinking the way you are thinking now. Even that is ok. you will feel your lowest lows and darkest darks, and that is perfectly fine too. it's so hard to be logical about these things and think about how you should and should not feel, logically speaking, when you are in the midst of such a tricky, painful, and frustrating period.

when we feel we don't have control over our own bodies, of course we will lose control of parts of our minds.

keep napping, keep hanging out with the wifey, and keep posting! you will be surprised in just a few months how things will improve. So hard to grasp right now, I totally get it.

~
*note the above assumes everything per your doctor is ok with your pouch. then it's just the crazy adaptation period we all go through with this cool new organ Wink.
C chasingtime (Guest)
nice replies! thanks guys. mostly my body feels great but my butt feels exhausted like i have to constantly flex it. i also learned im not managing my stool consistency properly. its either too loose or too thick so im either running to the john or sitting on it pushing. i think the key to success is finding a way to stay in the middle and not cause too much gas. what a tricky balancing act this is. anyone figure that trick out yet? maybe its getting thick with slippery foods??? then things wont have to be right on the mark...
D DisneynutMember
I think my recovery was a lot like yours. I was fine during the day, but quite uncomfortable and constantly in the bathroom in the evening. I was kind of obsessed with how much I was going and this went on for about 9 months. I thought to myself, this is how it's going to be. I'm going to obsess about this forever. Well, then one day I realized I wasn't obsessing. It was wonderful. One thing that didn't help was that I had a thrombosed hemorrhoid. It was so painful. I think I had hemorrhoids before so that wasn't helping. Also, I had strictures that made it very uncomfortable. I handled the stricture at home (don't ask me how---I'm sure my surgeon wouldn't be pleased).

Anyway, I just wanted to let you know that it gets better. I still go much more at night, but I am very happy with my pouch. The other day I went for 12 hours without emptying! I went about 4 times that night, but still, that's great.
C chasingtime (Guest)
that is amazing. congrats on that. is your success directly related to not obsessing anymore? i have a couple friends with j-pouches that dont go out at night cause the pouch is active then. i hope i dont feel the need to stay home at night. i mean they have bathrooms everywhere for a reason. any thoughts on this? btw how did you self treat your hemmoroid and stricture?
H honestyisthebestpolicy (Guest)
quote:
im about 3 weeks out from my takedown with zero complications so far.
3 Weeks is actually little to nothing. My pouch screwed up on me pretty good during the first few years. I came down with pouchitis, and an ulcer plus my gallbladder was removed too. I'd say you could breathe a little easier after the first 5 years are over. That's not to say you don't want to let your guard down after that.
skn69skn69Member
Tom,
I called it 'talking myself down from the ledge'. When I had my series of failed surgeries I was constantly waiting for 'the next thing to go wrong' all of the time and the least amount of difficulty with my k pouch (getting my tube to go in, leaks etc) would send my blood pressure through the roof, my heart racing and my brain into a 'white panic mode'. Every time that I went to the bathroom I expected catastrophy (and often got it).
So, I would talk to myself (and my pouch) in my head, talking myself through it and telling myself that this or that is ok, normal or just take it easy and relax.
I hid my fears and pains and terrors (other than to the kind souls here) and lived in my head with those terrors...so don't bottle it up, better to let it out and talk it out with your wife, family or friends..it is brand new plumbing and defies logic that it works at all...so give your brain time to wrap itself around the biologics of it all.
I found that counting down helped me too...I would count seconds or minutes or try to find patterns in everything that I did...this food plus that drink = this result...And try to figure out what worked best. For me it was chicken. My pouch loved it and that is about all I ate along with thick, creamy soups for a couple of months..After I was more comfortable with my output and my reaction to certain foods I was ready to reintegrate new ones.
Don't rush it, give yourself time, you are really very early in your recovery stage...this is a lifelong race so there is no point being in a hurry.
Sharon
G gleamMember
Hey Tom,

I have all of the same feelings as you do. Your post sounds exactly how i feel. Although, my frequency seems to be when I wake up and late at night. I think I am over the butt burning phase (knocks on wood). I was eating bowls of cereal to combat the butt burn. I figured milk was a base so if my butt is acidic, let's ph balance it.

Two days ago I forced myself to go to Lowes and purchase some needed home repair items. I was extremely nervous about leaving my house for the first time since takedown. Thinking back, I didn't even think about using a restroom. Although I was having a hard time keeping my shorts on, I've lost 18 lbs since the first surgery in March and my shorts made me believe it!

Yesterday I helped a friend and I ventured out again. This time more than 20 mins from home. I had one spasm that I controlled with no problem. Again, it was great to get out.

I am starting to think the more we sit around seditary the more we think about our jpouches.

Let's get outside!
Laurie49Laurie49Member
Tom, everything you are experiencing is normal. You are experimenting with your foods and that's just what needs to be done. You will rule out certain foods at certain times of the day or in some cases -- at any time of day. However, if it's something you love -- reintroduce it at a later time. As your body heals and adjusts, you will be surprised as to what you will be able to eat/tolerate. Also, I remember constantly running to the bathroom because I wasn't sure what meant 'right now or else" or what could wait. You will become familiar with all of the new sensations. Be patient with your body -- it's been through hell. And please know that you will figure this all out -- one way or another. You seem like the type of person who will do whatever you need to live the best life you can. You are not a victim -- but a survivor. Hang in there!
C chasingtime (Guest)
you guys are amazing. thank you. last night was my worse night ever. at about 3am the urges began and went for quite a while passing very little loose stool each time. id pass a little then strained to no avail and cleaned up quick to get back in bed only to repeat all over again shortly after. i dont understand why i dont completely empty even if its loose. i tried drinking tons of water to move everything only to have to constantly pee then i slept a bit this morning. after a little shut eye a pretty strong urge and i passed some stool mixed with one of the bottles of water i drank. very loose but relieving. can anyone confirm that its normal to wonder at times if youre going to be ok? ill have great days then want to die through the miserable nights of straining. my surgeon called me back to confirm this is all normal but when im the one suffering im not sure they understand the intensity then i question my own pain threshold. am i weak? why does the new system behave half the day then seem to lock up at night? im just so confused and scared that this is going to be my life or that my pouch will fail etc. ill feel good for a bit after hearing from my surgeon then i crash. im so glad to hear that you guys are finding some success with your pouches but it concerns me that im not keeping up. im 25 days post takedown and havent seen any improvements. i take that back, my days have less frequency and can be pretty comfy but the night are just as bad as theyve been and last night being the worse. i did have some rice yesterday which seemed to mess me up before so im hoping thats why. im hurting so bad at night that im literally back to just toast. would other foods make stool pass easier in the tough nights? any advice is sooooo welcome. i swear if my butt didnt lock up at night id be feeling amazing. sorry for the long rant im just exhausted and beat. thanks guys... one more thing, could imodium be messing me up? im turning to dilauded on the really bad night just to make it tolerable. ok im done...
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mgmt10mgmt10Member
Oh thats right, I remember now...forgive my bad memory. Roll Eyes I don't know if this will make you feel any better but my surgeon told me it could take up to a year for your new plumbing to adjust. I was fortunate not to have waited that long. I know when you are in the thick of it all like you are right now, it seems like it will never get better. But it will and really, only a month is not much time at all yet for your body to adjust. In the meantime it's good you have this site to vent away on. Smiler
D DisneynutMember
Well, I really don't want to say what I do...this isn't exactly what I did, but close. I copied this below from the internet so you could see what someone else did. It worked for me. I think the hemmies were causing some of those problems. However, if you think you are having these problems, you should see your surgeon. My surgeon was 5.5 hours away so I thought I could try this.

What I did - I went to a sex shop and bought a small anal plug (it's a sex toy, but I thought if they sell it for that specific purpose, it just might help). With lots of lubricant, I slowly inserted it and began increasing the size of my opening. It hurt like crazy, but there has been progress. It's been 6 weeks now. While my doctor still isn't completly satisfied, he is pleased to see how much progress I've done. He did tell me that this is a long process and I may have to continue to do this for a few months. He really liked my idea of an anal sex toy - thought it was quite ingenious.

As far as the hemmies went, I had to go to a hemorrhoid specialist, and actually that might have been a mistake according to my surgeon. He gave me some wonderful ointment that really helped. The problem was that my surgeon told me to throw it away because the stuff can cause incontinence. It got me through the really bad pain and I threw it away. I never had incontinence problems, but I don't want to start.

Are you straining during the day or is this just at night?

Good luck to you...I hope you start feeling better soon.
D DisneynutMember
Wow, that would be wonderful! Ok, I'll tell you what I used...a tapered candle (still inside it's plastic wrap) that I put saran wrap around each time and put lots of lubricant on. That way if for some reason it would break off, the saran wrap would hold it together. It was the perfect size. I figured if the doctor was going to put her finger up there, this was about the same size. I never went past any farther than a finger's length. The first few times (I would do it at least once a day), it was very uncomfortable. Then after a few days it would hurt less and I was able to go to the bathroom without it feeling like I had a bowling ball up my bum. Again, I'm not recommending this!
fqfqMember
the best thing to use for self-dilation is a thin candle.

However, i would NOT suggest doing this without letting your doctor know first, especially since they think everything looks great and you have NO stricturing to begin with! So why self dilate when you have no stricture??????? I don't see the point in that at all!

i actually had a stricture that was dilated in-office a few times, and finally stayed open. i STILL have some issues with straining and strained a lot more in the first few months, which of course is not good. Remember in my case now, there is no longer a stricture. i think I sometimes have difficulty emptying because of:

1.) Pouch adjustment (individual, since not everyone experiences this when adjusting to their pouch). I am still learning, adapting and experimenting, and things don't feel exactly the same every time i poop. it changes and varies!
2.) Learning to use the muscles down there again. it's hard to think of pooping and not subconsciously WANT to strain a little. That's how we pooped most of our lives!! That's what the brain correctly thinks a rectum should do!!! We have "neo-rectums" now though. They don't work like a normal rectum, and your brain and body will learn that. over time, your brain and body will be in more sync and you will realize "oh wait, i don't really have to push and push. i just wait longer or move around, more will come out." IF IT DOES NOT COME OUT and you don't feel 100% empty, DON'T WORRY. THE POOP WILL EVENTUALLY COME OUT SOONER OR LATER. Better to clean up, get up, and go back to the bathroom again, rather than strain and strain to get the last bits out. These clustering episodes will diminish!!!!
3.) DIET, meds. In my case grape juice, green tea, walking around, helps because i think my gut is slow. If I eat too many bulking foods or take a lot of imodium or lomotil, it becomes even more difficult to empty. Pain killers also constipate. i do not have diarrhea like a lot of j-pouchers. we are all different. The body and pouch are adjusting to foods. Some things didn't make any difference in the beginning like fiber. Now fiber helps me a little more.
4.) Possible kinks or tight spots that haven't "softened up" yet.

since your dr. has confirmed you do NOT have a stricture, i do feel this is all still part of the early adjustment days where your body and pouch are still figuring out how to empty, and YES, like other things, this has gotten better over time. WORD FOR WORD, I felt EXACTLY like you and had the EXACT symptoms. just because your poop is loose, does not mean you will always be able to completely empty. do not expect to know your pouch or your pouch to know its job this early in the game.
C chasingtime (Guest)
fq, what a great reply!!! i take comfort in ever word. may i ask one more question of you folks. i remember after my j-pouch was created it was hard to sit and my anus felt bruised/sore a lot but eventually faded. now after my takedown that feeling is back. im assuming that now because its getting used a lot the bruised/sore feeling is normal and it too will fade. am i correct?

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