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Take down scheduled

runner4449runner4449Member
I'm new to this group, and think I found it just in the nick of time for my 3rd surgery...the take-down. I'm scheduled to have it done on 10/11/12. I'm very nervous about life with a J-pouch. I have despised having an ileostomy because I've had so many skin issues no matter what my ostomy nurses have tried to make it better, so will not be sorry to see it go. However, I've had just about every hiccup imaginable after both of my surgeries, (5 additional hospitalizations on top of the 2 surgeries), so I am very anxious at this point.

All of my surgeries have been at a military facility. I like my surgeon, and I think he has done good work so far, but he is very inexperienced...he doesn't see this every day like they do at Cleveland Clinic, or other hospitals. My insurance will not authorize me to go to CC because we have my surgeon at the base. As well as being inexperienced, he's military and not always at the base when I need him, and there is not another colorectal surgeon there. I'm left dealing with general surgeons who either make guesses as to what is going on with me, or flat out don't want to touch another surgeon's work. It doesn't help my confidence in this matter to not only deal with my health issues, but to not be able to count on who will be taking care of me. I can't afford to pay out of pocket to go to other hospitals, so it is what it is.

There seems to be a wide range of outcomes, both short-term and long-term, so I'm reluctant to ask exactly what to expect after the take-down. I'm all ears, though, if you have any "must know" information to share with me.

I've been very depressed about how my life has been forever changed on top of being anxious about the unknown. I'm grateful I will never have UC again, but I'm really struggling with accepting and dealing with this new life.

I have good friends, but as time has worn on I feel like most have either forgotten about me, don't know what to say or do anymore (or they say the worse things thinking they are being helpful), or have become accustomed to me always being sick. My husband and children have definitely become used to the situation, and there has been a lack of sensitivity and empathy as they have become "immune" to what is going on with me.

I led a very active life as a distance runner before UC took me down, and I'm afraid I'll never have the bowel control/spacing to be able to run distance again. Even if I am, I'm concerned about whether I can be even remotely competitive any longer. I'm not prepared to give up my passion. It's been difficult enough putting it on hold. My dream is to get back to distance running, and to do the Ironman on my bucket list. Any runners/triathletes out there?

I feel alone on top of just about every other emotion imaginable. I never thought to expect the mental, emotional, spiritual aspects of going through something like this. Doctors and nurses do not prepare you for it, and are of little help when it hits.

That's the short of it even though I think I'm being a bit wordy at the moment. I do have three pressing questions at the moment...

1. Is it common for people to have to use enemas to stretch out their J-pouch before the take-down? I'm SO sick of doing this every night. I know I only have 5 more weeks to go, but it's contributing to my depression.

2. Is it common for people after step two to have a higher, more watery output in their ileostomy due to a shortened bowel because so much of the bowel is "at rest"? Unless I'm incredibly diligent about what I eat and drink, this has been a persistent problem since the 2nd surgery.

3. If the higher, more watery output is normal after the 2nd surgery, does it get better after the 3rd surgery since you have use of your entire small bowel again?
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O OnwisconsinMember
1.I never did and it was never mentioned as a potential need in any of my consultations. however, it may mean you have less frequency after your take-down instead of it stretching on its own. And that's a good thing.

2. After the temporary ostomy surgery. It was all very dependant on what I ate. If I ate fish- super watery. I almost always ate some mashed potatoes or applesauce with my meals to keep it less watery.

3. That was a huge concern of mine too, I was worried I would be all water after the surgery becuase that's what was in my pouch. After the final takedown, I found the first few days living hell, going burning liquid 15-20 times a day. Three days later, I started getting the 'puddy' like consistency that you should expect and I was a little more relieved as I moved down into the 12 times a day range. Today its 4:30 and I've only gone three times, however I tend to go more at night than in the morning and early afternoon.
runner4449runner4449Member
Thank you, Wisconsin! I know the purpose behind the nightly enemas is to help me. I've moved from being able to hold 50cc to 200cc. I need to remember I'm just 5 weeks away from the take-down, and while I'll have a host of new inconveniences, in time my life should be much better than it was with UC.

It's so strange that I was able to eat and drink whatever I wanted after the first surgery and all of my stools were well-formed, but it's been such a battle to keep it well-formed since the 2nd surgery. My husband is really confident that once I get to use the rest of my small intestine and J-pouch it'll get better again. I hope he's right.

Does Pepto help with the burning stool?

Thanks for responding and sharing some of your experience with me.
BD Blake D.Member
I just had my takedown 2 weeks ago as the last step in the 3 part surgery like yourself. I never had to do the enemas, but the doctor did stick his thumb up my J Pouch before the surgery to see if it was open, so kind of the same thing. My output was much more watery with my 2nd stoma after the 2nd surgery. This stoma sucked, I had a lot of problems keeping a bag on. After your J Pouch, your stools will get better with time. I'm passing what's best described as pebbles right now, but not a lot of liquidy stools so that's progress. Something I did not know was the spasms you get with the J Pouch. They're the worst part for me. I get the feeling like I'm gonna crap my pants and have to squeeze my sphincter real tight so nothing comes out. That happens very frequently and I'm hoping that stops or lessens with time. Bring some Calmoseptine lotion with you and start using it day one. That will help with the butt burn that you will become familiar with. You can get it over the counter at Walgreens. Start doing kegal exercises if you haven't already. You're gonna need them muscles in good shape. Expect to shart your pants a time or 20. Haha, I did a lot my first week. I'm only 2 weeks into the J Pouch, I have a lot more healing to do but I do notice progress already so that's positive. Good luck!
runner4449runner4449Member
Haha, Blake! Thank you for the blunt, to the point, yet funny reply. I needed that laugh. I really appreciate knowing your 2nd stoma stunk. I have been so exasperated by mine, especially after the first one was so much better.

Thank you for your tips and suggestions. I can't believe I only found this website and its forums now, but I'm glad I did. I already feel a bit better knowing I have real people going through, or people who have gone through the exact same thing to turn to.

It sounds like you are doing pretty well after your take-down. Congratulations, and best of wishes to you for continued healing and improvement. I'm sure you'll see more posts from me in the future as I'll have more questions, and want to keep folks updated on how I'm doing. Hopefully I can be a voice of hope to someone else someday.
S Srf1Member
Wow, a lot of us new J pouchers here lately!

I'm 1.5 weeks out from having takedown surgery myself and so
far has been going along really, really well.

No regimen of pre surgery enemas here for me but I also had
my j pouch manually dialated by my surgeon the week prior to
surgery when I had a gastrograffin x ray to check
for any pouch leakages.

The loop ileo for me was a real downer. It ran like a faucet
and I had to empty my bag 10 - 12+ times/day. I'm
so glad it's gone now, there's no going back for me.

Since takedown everything has firmed up much better.
Pasty/nuggety consistency now with no urgency to have to run
to the bathroom. I can hold it and the longer I hold it the
better formed things are. I had a couple of episodes
of buttburn the first few days but nothing lately. I'm going
about 7 -8 times/day but most are clustered in the early
evening. I get up and have a BM and then have been fine till
after noon most days. If everything works out well for you
you should be able to do your running competitions with no
problems.

I've been keeping a food log and really, really watching
what I've been eating and seem to have a decent base of
tolerable things established. Bananas and yogurt for
breakfast, simple turkey and cheese sandwich for lunch or
flour tortilla and melted cheese quesadilla, boneless,
skinless chicken breast for dinner, pasta, cooked carrots,
chicken soup with some french bread. I've been trying to
stay really consistent on what I've been eating and let my
new pouch find it's happy place.

Good luck and let us know how everything goes!
runner4449runner4449Member
Srf1 - It's so good to read your post, and I'm thrilled to hear you are doing so well. It's also good to hear another person say the ileo-loop was burdensome. It's been way too much work for me; especially after the first stoma was so well-behaved.

I'm very disciplined in the diet department, so am hoping this will be a key ingredient to success one the take-down happens.

It seems like most people do not do the enemas to stretch out the J-pouch before the take-down, so I can only hope that by doing this it will help me start off on the right foot using my new plumbing.

I will be admitted to the hospital the day before my surgery where they can do the tests to confirm the J-pouch is ready to be functional. It will also allow me to stay the night so I'll be ready to go first thing in the morning.

I think I forgot to mention that I have a port these days. It was placed during my last hospital stay because I've become near impossible to get an IV started, and even if they get in the IV doesn't last much more than 24 hours. Even the "top dogs" at the hospital have struggled. Finally someone realized it was not humane to be stuck 10+ times every day trying to get labs and an IV. I didn't even know getting a port was an option for me, but it's been something that has relieved me from a lot of unnecessary anxiety and pain regarding getting stuck. Since the port was put in it made getting meds and drawing labs easy and painless.

I cannot express how relieved I am to finally be chatting with people like me. I haven't had this for the last 9 months since UC took me down. Thank you so much for taking the time to share part of your story with me. I wish you the best and continued success!
SBSSBSMember
Runner4449, best wishes for takedown next month! Hang in there, it can be a lonely experience, but you've come to the right place. As for your questions:

1. I didn't use enemas, but my surgeon did have me irrigate my pouch by inserting a rubber tube into the lower stoma and using a syringe to fill my pouch with water to both stretch it and exercise my sphincter muscles by slowly releasing the water (sort-of like Kegals)

2. I found the output with my ileostomy to be inconsistent; sometimes watery sometimes thicker. I'd recommend starting a food journal now so that you have an idea of what causes things to be watery and what doesn't. That information will come in handy after takedown

3. Things definitely improved after takedown and continue to evolve to this day; I find it's a never ending process

I also wanted to address your questions/fears about running. You will be able to exercise and run again after your body has healed/recovered from the takedown. I'm a runner myself (I've even done a few half marathons) and the only worry I've ever had is dehydration (I carry my own water in races). One thing you might want to check-out is Team Challenge; the endurance events and fundraising arm of the CCFA (ccteamchallenge.org). I've run two half marathons with them, but they also do triathlons and and a long distance bike ride. Please feel free to PM me if you want to learn more.

Kind Regards,
Steve
fqfqMember
i didn't have a loop ostomy, but i haven't heard many people having to do enemas. i think over time the pouch will stretch.

quote:
3. Things definitely improved after takedown and continue to evolve to this day; I find it's a never ending process


Wow, SBS. I cannot believe after 23 years, your pouch is still evolving???!!! how can that be? i cannot imagine the act of pooping changing or improving that much. isn't there a plateau eventually? guess we have a lot to look forward to! Red Face Wink
runner4449runner4449Member
SBS,

Thank you for your reply. I have the option of stretching my pouch from the stoma, too, but for some strange reason I can't make myself do it. I'm not typically squeamish, but trying to insert something into my stoma makes my skin crawl. So, the other option was to stretch the pouch from the other end. Don't ask me why this option creeps me out less, but it does. I do see the benefit of starting the stretching out process before the take-down, but I'm certainly tired of it. Just under 5 weeks to go until the take-down...I will survive.

I'm familiar with Team Challenge through CCFA. Our family did one of CCFA's walks in June right before Step 2 surgery. I will most definitely be looking into participating in Team Challenge events as soon as I can. Maybe I'll see you at one in the future!

It's great to hear you've been able to resume an active life. This is so important to me. It's been difficult needing to skip out on my daily runs. I can see what you mean about hydration being an issue. I especially have struggled with that since Step 2. I almost passed out at the pool one day this summer because it was so hot. I was drinking water, but between not being able to absorb liquid/nutrients as easily, and I was probably sweating more than I was able to take in, our pool visit was cut short that day.

Would someone tell me their experience with using Pepto Bismol? I've read a couple of places where people said they used it, but I was wondering what for? Is it to help with butt burn? I'll start another thread asking about it if nobody responds here.

Thanks again to every one who is responding. I can't tell you how comforting it's been to hear from people just like me.
L liz11Member
I have never heard of anyone stretching their pouch with enemas. Having too large of a jpouch can be functionally problematic. In my case, because the pouch was too large, it would collaaps on itself when trying to emtpy. This prevented it from being able to empty completely which in turn caused many problems including permanant pouchitis, having to go 30plus times a day, spasms, and pain. I sure hope your doc knows what he is doing because a large pouch is not necessarily a good thing.
runner4449runner4449Member
Hi Liz11,

I'm sorry you've had such trouble. How did your J-pouch get too large? I'm definitely interested in hearing about it to become better educated on potential problems if you have the time.

I know the water enemas are not necessary, but they also are not supposed to be harmful if done properly. The goal is to be gradually build up to hold 200-250cc for about 10 minutes. I've spent weeks building up to 200cc, and that is where I'm stopping.

Here is more information from the Center for Colorectal Care about J-pouch irrigation.

J Pouch Irrigation...

"The purpose of pouch irrigation is to gradually expand the reservoir or pouch capacity, strengthen the anal sphincter muscles and cleanse mucus from the lower bowel. This irrigation should begin no sooner than 14 days after surgery and then performed daily until the ileostomy is closed by surgery.

The supplies needed for irrigation include an empty enema bottle, a water soluble lubricant, and warm water from the faucet.

The steps of irrigation are as follows:

1. Fill the enema bottle with 50cc (1/4 cup) of water.

2. Lubricate the tip of the enema bottle.

3. Carefully insert the tip approximately two inches into the anus.

4. Gently push the water from the bottle into the pouch. If the water drains at the tip, advance the tip a little more and continue to instill the water gently.

5. Remove the enema bottle from your anus.

6. Try to hold the water as long as you can, up to ten minutes if possible, while doing a pelvic floor muscle exercise, and then expel the water into the toilet.

7. If you are able to hold the water easily, increase the amount by 50cc each week until you reach a maximum of 250cc. Do not instill more than 250cc into your pouch at a single time.
Note that the water you expel may be only a small amount, since your body will absorb some of it.

Remember, each time you put water into the reservoir, keep it inside (up to ten minutes) by doing a pelvic floor muscle exercise. This will strengthen your sphincter muscle.

Also note that as the volume of water increases there will be a tendency for some of it to reach the stoma in your abdomen and be released through the stoma opening. Do not be alarmed, as this is normal."

My surgeon did not receive his training from them, but where he did his fellowship for colo-rectal surgery used j-pouch irrigation as a way to prep for the take-down. As much as I don't like doing the nightly enemas, according to my surgeon his patients have had a good head start in their ability to control their urgency and frequency using the restroom. Hopefully that will be my story as well. I'll certainly keep every one posted.
O OnwisconsinMember
I'm sorry runner, but that process sounds awful. I HATED enema's when I was going through all my UC issues. I could not stand them, I always had to evacuate way before they wanted me to. Once I had a flexible sigmoidoscopy while I was awake- worst waking 15 minutes of my life.

Getting something out is much more satisfying than something going in, so I can see how you said it is affecting your psyche. As many mentioned on here, if your pouch is functional and everything is good, your times will go down fast over the first few months. I just am not sure I could do the enema thing. I'd rather deal with the but burn which can be treated by calmoseptine than an enema.
L liz11Member
No one is willing to definitively say why my pouch was too large. Either my initial surgeon built it too big (I am a petite short waisted woman and I feel he might have built it for the average male) or it stretched on its own BEFORE takedown. I know it was too large before takedown because the surgeon who did the takedown told me after the pouchogram that my pouch was very large and he told me that was a good thing. At that time, I believed him. But how wrong he was. I didn't find out until a long time later when I finally got to more experienced docs at Cleveland Clinic.

Like I said I surely would be concerned about overstretching and getting too large of a pouch. Its a huge huge problem if your pouch cannot empty properly.
Also found this paper about this irrigation thing. It states there is no difference in post takedown frequency.
http://www.ncbi.nlm.nih.gov/pubmed/9043272

I think there are a lot of surgeons out there doing jpouch stuff that really don't have much experience but they act as if they know it all. I believe this is what ends up causing so many problems for so many. My problem caused me multiple more surgeries, long periods of time with virtually no quality of life, and now a permanant ileostomy.
SBSSBSMember
Runner4449, I hear you about the thought of inserting a tube into the stoma site; it still gives me the shivers thinking about it; that and drinking the GoLytely before surgery . . . ugh!

Not too sure about the Pepto Bismol thing. I've read some on here about it, but it's not something I have experience with.

If you want to give yourself a fitness goal for next year, you might consider the Spring 2013 Team Challenge race. It will be the Virginia Wine Country Half Marathon to be held on June 1st, 2013 in Loudoun County, Virginia (just outside of Washington, DC); not too far a drive from the Buckeye State I'll likely be involved with the DC-area team in some capacity (coach, mentor, water table, etc). I am sure there are teams based in Ohio. The information sessions and training will likely start by the end of January next year.

Fq, as for pouch 'evolution', I think of the line from the movie "Parenthood" in which the grandfather tells the son/father that "in life, there is no finish line" (or something to that effect). So, in other words, my experience is there is no plateau; you will continue to adapt to your pouch and your pouch will continue to adapt to you. For example, the first 10 years or so I rarely slept through the night without getting up at least once. Now, rare is the night that I have to get up to go; though I sometimes get up to pee. ;-) Likewise, I often find that the more I run, the longer I go between trips to the bathroom (probably because I'm slightly dehydrated after running; not that I recommend dehydration as a way of controlling things!!). Further, several years ago I experimented with mixing gelatin with my yogurt to help my then aching knees and I found that it, on top of the Metamucil I take, was thickening things up too much making it hard to go, so I had to cut back on the amount of Metamucil. You get the point . . . it's a never ending game of adjustment and re-adjustment (in my humble opinion). No big deal; just the way things roll with a jpouch (or 'flow' as the case may be).

Prayers & Best Wishes,
Steve
JP Jeff P.Member
Runner 4449,

Welcome to the site and good luck with your surgery.

I'm in Boston with a very experienced doc. He didn't have me do enemas and until your post, I never heard anyone mention them. If all of us had surgery and did fine without the enemas, I'm sure you could too. If they are making you miserable, you should consider talking to your doctor about stopping. I'm sure you have enough unpleasant things with the bag and don't need another.

With less room to absorb, things will be watery unless you eat a lot of binding foods (Mac n cheese, peanut butter, etc.).

Jeff
runner4449runner4449Member
Thank you all again so very much for responding to my post. My spirits have been lifted since finding this group. I appreciate the honesty and humor, and that the people on here seem to be "real". Even my husband commented today on how I seem to be feeling much better. He's right. Camaraderie is exactly what I've been needing.

LIZ11- I'm so sorry you've had such a tough time with your pouch. I see where you are concerned about my pouch being stretched out too far, and your feelings toward inexperienced doctors based on your experience. I don't think I'm having the issue of an overstretched pouch at this point. I definitely had to work my up to holding 200cc, so I think if my pouch was too big to begin with it would have been easy to start with 50cc, but it wasn't. I also don't think 200cc is too much to hold. In fact, I expect my pouch to hold this much. If it can't I will be disappointed. As much as I dislike the nightly water enemas/irrigation (WISCONSIN, you are so right, everything comes out easier than it goes in...lol), I do believe it has really helped build my sphincter muscles. I certainly don't engage them as well through Kegel exercises. The irrigation forces me to work harder to hold it. However, I really appreciate the article you posted, and it certainly makes me wonder if I really need to do them. Based on that, Jeff P.'s thoughts, and the fact that only one other person on this post has mentioned irrigating, I am going to put in a phone call to my surgeon and see if I can at least back off them; not because I think they are harmful, but that they are a nuisance. I'm fortunate to have a surgeon that does not have a God complex. He has listened to my concerns all along the way, been willing to flex with me wherever possible, and acknowledges that I know my body better than he does. This is also the guy who prays with me, and holds my hand when I first get into the O.R. (I get anxious when they first stick the mask on my face to put me out).I should clarify that none of the complications I've had up to this point have been his fault, or as a result of his work. He admits he is not as experienced as the docs at places like Cleveland Clinic, but he isn't completely inexperienced either. All of his patients have had great success, but he also admits that he doesn't done tons of them like CC. I know he's going off of the training he's received, and what he has seen work well with his patients thus far. He's also said that if we were to have serious pouch trouble that he felt was beyond his capability he would send me to CC. I believe he has my best interest at heart. LIZ11, I hope you are doing much better now. Without re-reading the posts, I can't remember if you said those awful days are behind you or not. God bless you!

SBS- I'll be sure to keep you and everyone posted on how recovery goes, and how I do working my way back up to running again. I'll also keep you posted if I get involved with Team Challenge in the next year, and hope to meet some of you if I do. Thank you also for clarifying what you meant about pouch evolution. It helps me to have all of the details. Nobody likes to be surprised in situations like these, so the more stories I hear (the bad and the good), the more realistic picture I feel I'm getting as to what I can possibly expect after Step 3.

I've been lucky to have our youngest Godson stay with us this weekend, but he's 2 years old and keeps us very busy. I haven't looked at other topics of discussion that may have gone on over the weekend, but I look forward to perusing them this week. Whoever started this website is a genius in my eyes. Thank you!
JP Jeff P.Member
Runner4449

If you are anxious about the OR, tell your anestesialogist you Want to be drugged up before going into the OR. I was nervous for my first surgery and didn't want to see the doctors, nurses, machines, etc. You need to be awake when they bring you in so they can move you and get ready, but they gave me some good meds so I was loopy and didn't remember it. They used the same drugs they use for scopes. I didn't remember a thing.

I didn't ask for it for my second surgery because I was happy to get rid of the bag and was awake and remembered everything about the OR.

Jeff
runner4449runner4449Member
LIZ11 and fellow pouchers - I was at the hospital today to have my stent removed (had one for my ureter), and dropped off the article LIZ11 recommended I look at regarding J-pouch irrigation/enemas. My surgeon happened to be at the hospital today, and I asked the staff to make sure he got it and called me after reading it. I just got off of the phone with my surgeon, and I'm happy to say he is perfectly okay with me stopping the enemas. Once again, acknowledged that I'm a competent woman who knows her body best; to feel free to stop them. He re-explained his thought process as to why he had me doing them, and like I said before, he had my best interest at heart. He was trained at UCLA, and pouch irrigation is protocol there. His j-pouch patients have done very well post-third-surgery; nothing to alarm him that j-pouch irrigation is harmful. He said every hospital and surgeon follow certain protocols, and sometimes they differ from place to place. He also said that he had to make my J-pouch a little smaller than usual (I have a small frame, and didn't have as much to work with), and his thought process was to gradually stretch it to make life easier after the take-down surgery. I do believe the pouch has stretched because I went from barely being able to hold 50cc to holding 200cc. It was really nice to talk with my surgeon, to have him listen to everything I shared with him, and know that stopping the enemas is a reasonable choice in his eyes. He promised me it wasn't a show stopper...meaning I don't need to do them in order to have the 3rd surgery. So, thank you to all who responded to this thread. This group has been a Godsend in many ways, and I've only been on here less than a week.

JEFF P. - I have a 30 minute appointment with my surgeon in two weeks where I get to really talk with him and ask more questions. I'm going to ask for the meds to help me relax for the next surgery. I thought about asking for them for the last surgery, but thought I would "be brave" instead. I am really looking forward to getting this 3rd step done, but I have a feeling I'm still going to be very anxious. Having the best possible experience/outcome from these surgeries have been my surgeon's priority, and I'm confident if I tell him I'd like some happy drugs for the next surgery he will oblige. He's been very approachable and reasonable with all of my concerns leading up to this point, so I think he will on this point, too.

Till next time...
SBSSBSMember
Runner4449, it's nice to hear the optimism in your voice. :-)
It's a tough road we have to walk down, but you will get
through it. No one ever says it will be easy. Best of all,
you are not alone; you have a new set of friends to take
the walk with you (even if it's only virtually). That goes
for everyone on here. Hang in there and best wishes for an
issue-free takedown. I'll be looking for you on the running
trails in the not so distant future. Steve

PS: love your new avatar/pic :-)

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