discouraged after takedown

PS... She came home from the hospital yesterday.

She may be having motility issues which are very common after takedown.  Are the BMs coming in rapid succession after meals, and if so, has she been given any anti-spasmodics to take before meals? Excessive peristalsis is a very common issue- I had it for a year after takedown.  It's totally controllable with drugs like bentyl, levsin and donnatal taken 45 minutes before meals, although they could produce some side effects of feeling loopy.

 

Imodium is an anti-diarrheal.  It does nothing to combat excessive peristalsis.  Many people mistakenly believe it will resolve the peristalsis issue but all it does is thicken the bowel movements.  The antispasmodics control the excessive peristalsis issue.

Recovery takes time and what she's experiencing is normal. Hopefully her surgeon went over what to expect post op. It can take weeks for things to settle. Everyone heals at different rates. Some folks it's fast and others it takes longer. Things will calm down but it takes time. She should be eating simple low residue foods for now until things improve. And frequent small meals I found were better than larger ones. 

 

My surgeon didn't want me taking Imodium until two weeks after my surgery. (They worry about blockages) Just be careful  how many she's taking a day. 

I think it will take time.  As my surgeon said to my son, you have a brand new baby pouch, give it time.  My son still goes a lot at night.  Seems he is up all night and sleeps all day.  Your daughter is so young, I feel for her.  My son, too.  He is only 24.  Too young for our kids to have to handle all of this.  As a mom, I'd suggest bananas, potatoes, thickening food.  I don't remember if it helped or not, Jeff had his drop down in Sept.  But we have had issues, and having another surgery on Thurs.  His system is all messed up at this point.

 

mary beth i too came home yesterday last night i was up constantly with small bm had bagel and banana for breakfeast gone 5 times today diid take 2 imodium this morning first thing i am also hoping it takes time feel like i did before all surgeries good luck jj

Actually, Imodium (loperamide) DOES slow the gut AND increase water absorption. it slows peristalsis in the same way that opiates do. So, do not assume that an antispasmotic is necessary, as those are more for the crampy type pain associated with increased peristalsis. Although Imodium is chemically similar to opiates, there is no dependence, other than you need it as long as you need it. Like other opiates though, you do not develop tolerance, needing higher and higher doses to get the same effects.

 

I used the maximum dose of 8 Imodium per day for about four years. This did not bring my  frequency down to 6, but more like 6-10 per day. Many people do well with Metamucil for thickening, but it just increased gas and bulk for me, resulting in more trips to the toilet. 20 years later, I now take only one Imodium per day, gradually decreasing my dose. Most people take less time to adapt. Expect her to turn a corner in about three months. I had untreated cuffitis for years, so that was an issue for me.

 

The main thing is to not to expect change over days, but months. As long as she does not have serious urgency, pain, fever, ect., it is OK. I know it is hard to be patient, but that is the main ingredient. The doctors cannot be consistent because there is no consistency. One person's cure is another person's poison (Like Metamucil). You just have to be willing to experiment.

 

Jan

 

 

Thanks for your replies, it gives me hope. My daughter Lily went 20 times in the last 24 hours. I´m waiting to hear from the hospital, hoping they don´t want me to bring her back in as they were concerned about dehydration. She has been drinking quite a bit of water and zero calorie Vitamin Water but not sure if it has been enough, she had to go back after the first surgery for that reason but doesn´t have the symptoms she did then.

 

Thanks Jan, I gave her Metimucil yesterday and it seemed to help and gave it to her again before bed and she was up every hour. I´m thinking that wasn´t a good idea. She took 6 Imodium yesterday (one right before bed) and still went 20 times but in small amounts. 

 

She also has had some accidents and does have quite a bit of urgency but most of the time she can control it although she says it´s really really hard to hold.

 

Thanks again, this site has been helpful.

Good luck to all of you.

PS...  It doesn´t seem she has too much of a problem right after eating, her BM´s seem to pretty evenly spaced out throughout the day and evening.  I am TRYING to keep her on bland diet but she´s a teenager and wants what she wants. I think she is realizing now that she can´t eat whatever she wants, at least for now.  She has lost a few more pounds since her takedown which also concerns me as she´s a bit underweight. She lost 30 lbs since her first surgery but is up a few since.

It all sounds totally normal..to answer your question on going from 19 BM to 6 overnight, yes you absolutely can. matter of fact that just happened to me 4 days ago. i was going about 12 times just nighttime alone, i was taking metamucil during the day 3 times a day, i had my takedown january 26th this year so im a month and a half out. i switched myself from taking metamucil to Fibercon, ill be taking citrucil in a couple of days to see if thats better. Metamucil can cause gas which was just hanging around in me all day and needed to get out at night, but fibercon and citrucil market their product as being able to resist the fermentation that causes gas and when i switched from metamucil to them it was a game changer. 

Although I don't doubt that Jan is correct that Imodium works as well as anti-spasmodics for some people, it didn't for me.  I would eat a meal and then, in rapid fire succession, have 10 BMs in a half hour.  Antispasmodics taken 45 minutes before meals resolved that issue.  Imodium did not.  If the imodium isn't working as it wasn't in my case, anti-spasmodics, which have a more potent action, should be attempted.

 

Metamucil helps with thickening, regularity and clean evacuation.  I like the wafers, although they are a bit more expensive than the powder.

Yep - agree with everyone here. Totally normal. In fact, your daughter's experience sounds a lot like my own. 20+ bathroom trips, mostly overnight. Breakfast and lunch finally start making their way out in the evening, starting the BM train, so to speak.

 

It took time, healing, probiotics, and eventually fiber (Meta wafers) to drop things. Most of the 20+ trips were due to gas, honestly, and once that cleared up my # of trips to the bathroom dropped. But it was slow improvement for over a year. And months with the initial takedown issues. I was pretty tired during that time.

 

Tell her to hang in there. It will most likely get better with time!

 

Steve

Thanks so much for the positive feedback everyone, I really needed some hope today!  It´s so hard seeing my baby girl struggle and I just want her to get her spark back.

 

dgtracy, I am going to buy some Fibercon and Citrucil tomorrow as Metamucil gives her gas too and I think it may be why she had more BMs last night, I gave it to her before bed thinking it would slow her down. I´m glad this did the trick for you and hopefully it will do the same for my Lily.

 

I will keep the anti spasmotics in mind and speak to her dr about them, although she doesn´t have a problem after she eats.  She has very small BM´s throughout the day and night. As though she´s not emptying all the way when she goes. Or as a nurse told me, her new pouch may want to get rid of waste as soon as it gets in there and it will just take time to for it to adjust. Who knows.

 

Thank you all again, this site is a real blessing to me. I guess I have to be patient and figure it all out through trial and error. Its nice to have support from people experiencing it.

 

I wish you all good health!

Hi everyone ~
I couldn't resist commenting on a few things here (this is my first post so please bear with me I will try not to be too wordy).  Regarding Imodium…, immediately after my second part of my surgery (what I think y'all refer to as "takedown"), my surgeon prescribed "Lomotil" (atropine/diphenoxylate).  It, too, is an antidiarrheal that can be very beneficial—IMO more so than Imodium—however, it does have side effects not found in Imodium.  Some docs don't prescribe it early on perhaps because of possible blockage.  It's also in the same drug class as codeine because of the ingredient diphenoxylate, which has the potential for abuse.  The other ingredient, atropine, is to discourage its abuse.   Yes, Imodium (Loperamide) is (or contains an opiate, however, the minut amount does not pose a danger which is why it is sold OTC.  I can tell you from my experience that I have taken as many as 12 in one dose at night [hey, what can I say...I was desperate in the beginning], to as few as 1—I had no side effects during or after (e.g., withdrawal, GI, etc.), nor did I find that taking more was of any benefit than taking less.  My final surgery was in 2007 and although I've been taking 3–5 tabs daily, I honestly can't say that it helps.  I was told I could expect 6-7 BMs daily and 1 at night.  Sometimes I have none at night…it varies; I have as few as 2-3 to rarely more than 4 during the day BUT I spend hours in the bathroom, otherwise, I no sooner "clean up" and come out, I end up back in there moments later!  AND…l still have leakage at different times of the day or night and sometimes I'm not even aware of it happening.  Does any of this sound familiar to any of you?  I'm so thankful for finding this site—don't know why I waited so long.

My son complained of the same thing.  He would spend hours in the bathroom.  And he was having significant leakage at night.  Some nights he was up 3-4 times.  I forget now because he has been on TPN since January.  Even the TPN has been keeping him up most of the night.  

I'd discourage anyone from taking more than two Lomotil at a time. The atropine can potentially cause serious heart problems in overdose. I do find that Lomotil works better for me than Imodium, but I use it in moderation - at bedtime and before an outing with inconvenient bathroom facilities (e.g. on a boat). 

 

It can be very difficult to figure out why a pouch isn't working well. Sometimes it's within your control (e.g. kegels, fiber, antibiotics, Imodium, antispasmodics), and sometimes the pouch itself has structural problems. Pouchitis can be tricky, but it's usually pretty easy to treat. A course of Cipro or Flagyl is probably worth a shot for nearly anyone with pouch problems that just won't quit.

Omigoodness... I have to get to a work meeting, so I haven't had time to read all the responses, but I just wanted to chime in as someone who is 8 weeks from takedown... Take heart!  I know it can be SO SO hard and discouraging, but what she is going through right now is not necessarily her 'new normal'. At all!  

if it helps, have her look at her stoma wound (mine was left open).  That, for me, was a reminder of how much (incredible!) healing the body has yet to do. There is so much healing and adjusting going on inside there, and the stoma wound is just a small reminder of that. Things heal and get better, they really do! In the meantime, use the tools/meds that your doctor and the great folks on here suggest which make sense to you. Wishing you patience, strength and health!

I'm in my fourth week post takedown, and going about 10 times a day, with sometimes once at night.  Things get better with each week.  Good luck to her!

It does take time for the body to adjust and for the system to stabilize.  I do know that things improve with time, so patience here is essential.

 

Remember also that the system is now a gravity based operation with the pouch.  This mandates a period of time sitting on the pot -- perhaps up to 10 minutes or so -- to more fully evacuate the pouch.  I was advised at Cleveland that failure to do so would result in frequent bathroom trips over a short period of time.  Let the system function as it is and not as it was.

 

It will all work.  Now, if we could cure the problems caused by gas everything would be fine.

I had problems with urges it seems forever.  It would keep me awake at night.  Nothing would be there.  I tried everything until someone suggested an antispasmodic.  Worked wonders.
It says one every 8 hours.... I took one a day and it helped.  Now I only take them as needed.  Now this may not solve everyone's problems because as said a billion times here.  Everyone is different.
Richard.

I had my take down in 2007 and ot takes a while to slow dpwn. Over the years I find it gets easier and more predictable. I can give you some of what I've learned through living with the jpouch. First it beats the heck out of a bag hanging off your body for the rest of your life. Right now make sure she uses plenty of A+D ointment to help with irritation, it can become very painful going so often. As far as long-term, fiber is okay but to much and she will get the urge constantly. I find the need to eat foods that soak up moisture or fluids run right through and water stools start up. My biggest problem is blockages and it is the worst paint I've ever experienced. I fear eating chicken, canned mushrooms, corn to name the ones I have trouble with. The chicken (breast) is only when its not chewed enough, things like nugget never a problem. I hope some of this help and I'm possitive you girl will keep improving, it takes time. She will always have to deal with more bathroom trips than others but it will not be to the point she can't enjoy a normal life.

A couple questions..., 1] do the antispasmodics help to lessen JUST empty urges—I think you said you had urges but did not have to go.  Or did it stop the urges so that you didn't go with such urgency?  2]  what effect did chicken and canned mushrooms have on you?  Corn I need to be careful with (small portions) or else I get very gassy stools.  But chicken & mushrooms? Meals containing those 2 ingredients are my go-to meals if I'm having any kind of GI issue (probably not pouch related). My surgeon & a colleague put out a booklet, "The Illeoanul Pouch Procedure," which details EVERY & ANYthing from beginning to end, including the normal anatomy, ulcerative colitis, familial polyposis, surgical options, what you can expect after each surgical procedure, including your diet after each, etc.  It talks about pouchitis, obstructions, along with other issues you may experience.  It has 2 appendices…one has separate lists of foods that cause blockage, those that cause diarrhea, and those causing gas. It even lists foods that cause odor and those that reduce it.  The second lists both Forms & Types of meds to avoid.  There's also FAQs.  I have a couple extra copies and am trying to get a few more.  If anyone is interested, PM me and I'll send you a copy and/or the number to call to obtain a copy (I think they have a new # because I'm not getting an answer—I have others I'll try).

I have a question for Jeffsmom…what is TPN?  Also someone mentioned foods that absorb fluids.  Could you give me a few examples?  Last, regarding A&D ointment…because it's greasy I never used it.  It's probably best, however, if you need to protect the surrounding area.  I find a prescription cream, not ointment, called Hydrocortisone Valerate 0.2%, used sparingly, clears up any irritation/inflammation almost immediately—overnight or within the same day—even when it's inflamed to the point of bleeding.  Also, I never use dry toilet paper. My sink is right next to my toilet so when I'm done going to the bathroom I use water on my toilet paper as much as it takes to be clean, and then only dab with dry paper to avoid irritation when done.  I also use Cottenelle wipes if necessary.  When I first got home I had a foaming cleanser from the hospital…no rinsing necessary, and it was great!  I can't find it anywhere, including ordering they Walgreens, et al.
Hope some of this helps.

Spunkycat, TPN is intravenous feeding through a pick line in the arm and the tubing goes next to the heart.  I forget what TP means but the N is nutrition.  You asked about Desitian.  Jeffrey was so irritated that I had him using it before and after.  Before to keep the acids from further irritating his skin.  Call the hospital and speak to the nurses on the floor you were on, they may know what kind of foaming cleaner they used.  Worth a shot.  Also we use tons of Cottonnelle wet ones too.  Even on the TPN Jeffrey is still going to the bathroom a lot and his takedown was in September.  But he also has an abscess and fistulia right now.  Hang in there!

 

 

I hope you do well with mushrooms.  I've had 2 painful episodes with them but commercial cream of mushroom soup, like Campells, is okay.  Good thing I like chicken/turkey as it is almost the only meat I eat.  I tolerate sausage and pepperoni on pizzas, ground beef/pork and deli meats too.  Good for you I was done with corn before my surgeries  It sounds like you have a good guide and it might help others.  

Spunkycat, TPN stands for Total Parenteral Nutrition. Total because is your only nutrition, parenteral means (more or less) injected (in this case through a "central line," an IV in a very large vein so the stuff gets diluted quickly in the blood). If you can't eat, TPN can keep you going. It's very different from some sugar in an IV into your arm.

There is something to say about a liquidy output.  It is much easier to empty our J-pouch if the effluent isn't thick. If the sphincters are working well, a liquidy output is controllable.  Even after 12  years post takedown, I prefer a more liquid output and adjust my foods if things begin to thicken up.  Guess it is a matter of personal preference.  Gravity really plays a part in emptying.  So, sitting on the toilet for awhile and then standing up and walking around a bit before sitting back down on the toilet might bring further relief.  It works for me when I don't feel empty after the first visit to the toilet.  Trial and error and personal stories of what works and what doesn't work is the new name of the game!  Best wishes!

Oh!  Just thought of a food that my new J-pouch really liked.  It was a surprise to me!  MacDonald's French fries!!!!!!!!!   You might have your daughter try some and see how it works.  Basically, keep the foods eaten right now rather simple (boring).  Add one new food at a time and see how it does.  If it is problematic stop eating it for a few weeks and try it again later.  Small frequent meals are best.  Try to avoid gas producing foods for now.  Later, even gas producing foods are tolerable.  In fact, my J-pouch likes all foods and drinks.  It just took time!

for the 1st several weeks after takedown, I thought I had made a huge mistake having an internal pouch! I was in the bathroom constantly. My mom had had a traditional ileostomy many years before with no problems. However time (and meds) improved everything. I learned what foods made things worse--gas, increased frequency, sore butt,etc. My MD started me on alternating doses of Lomotil and Imodium, which helped. I am a pharmacist, so after reading up on anti- spasmodics, I had my family MD order me some Bentyl, also. I am  almost 14 yrs post surgery. I work an early morning (6:30) to 1pm shift, so I have learned not to eat solid food after 4pm. I still get up once or twice a night, and I wear Depends just in case,if I feel like I haven't cleared out, before I go to bed, I set an alarm for a couple hrs later. i think everyone is a little different with what foods they can tolerate. Oatmeal, Metamucil, any thing high fiber gives me horrible gas pains, while I know others do not have problems with them. Hope things are better for your daughter soon. Vickie

 

I have been spending some time on this board over the last few days and have made several detailed comments regarding drugs (codein, lomitol, imodium, pseudoephydrin) antibiotics (flagyl & ciprofloxacin), coping mechanisms (hose bidets & good cheap underwear liners) and also how things will improve. If you click on my profile, you will see a list of the comments I have made.  Spunkycat also gives some very good advice on other threads too so click on her profile as well.

 

The other thing I will mention is research, you can NOT do enough research as things in all areas will improve all the time. I've just found out about the sacral nerve simulator and will shift heaven and earth to get one.

 

In addition, I've done something I should have done a long time ago. I have now registered on a drugs information site that will record all my medications, research into alternative medications and heaps of other useful information I can share with doctors. Become your own expert on yourself so when you see a doctor, you know what questions to ask or even let them know of alternative drugs you can take.