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Posted 10/4/2010 2:31 PM (GMT 0)
Hi folk

For those of you who have had their ileostomies reversed how do i know if i am constipated?  silly question but i dealt with constipation for over 10 years till my ileostomy which freed me to have a life for 18 months.  Then i had it reversed 10 days ago but not a lot is coming away, even though visiting the loo 10 times plus a day and more, and from time to time i pass small blobs which i surely should not have if i dont have a bowel?  i am scared. sad   Is it too early to tell stil.?  i am not eating a great deal but my bag always  filled up even on a small amount.  i am soo so scared i made the wrong decision to have this reversal. shakehead

Posted 10/4/2010 4:33 PM (GMT 0)
Karen, the reversal is also reversable and you can always have the ostomy back if things don't work out for you. try to work on your diet and see which foods help you with your bms.

from my personal experience, my rectum is apperantly not functioning right (anismus etc) and i also had hard time having normal bms if at all. keeping a soft-liquid diet helped for a while, but not much and i always felt uncomfortable. at 6 mons post op even that didn't help and i started to have obstructions every so often, so i started to reduce my food intake more and more - the emptier i was, the better i felt.

now, with the ileostomy, i feel SO much better. i'm not constipated any more and don't have to work so hard on having a bm. b4 the ileostomy i had to take things to help move my bowels, but even when those helped, i could only have a tiny bit out at a time - frequent incomplete bms which bound me to the b/r for too many hrs every day. this problem is also solved now with the ileostomy. i'm very happy with my decision to have the ileostomy. i feel much much better this way and able to eat normally and lead a much more normal life.

i'd say for now you try to find the right diet to help you. some girls in our condition also find help with laxatives and do ok. you'll have to examine this for a while and see how it works for you. if nothing helps, then going back to the ostomy is really not that bad. you seemed to be very happy while having it, weren't you?
Posted 10/5/2010 9:40 AM (GMT 0)
Hodaya yes i remember the trouble you were having and i am so glad you are enjoying life once again - even though you need to do enemas from time to time.  Its so great isnt it when our health problems get resolved?

Yes, i was happy with the bag - most definately - but it was never meant to be permanent and i got so used to it - had it for 18 months.  Yes I will try with foods and drinks - i have bought some prune juice and prunes (never would eat them before cause even with a bag i would get bloated on fruit and veg) so will test that out, and will eat more fibre foods to see if that helps - fibre never agreed with me either when i had the bag - bloating and such.  I have also ordered some Benefiber i think it is,  from Amazon - you can get in chemists too over here.  it is a tasteless white sugar type powder consistency you add to food and/or drink for a fibre kick.  So that might help or not - might make me worse who knows.

Its been an emotional ride so far and i am still not out of the woods but trying not to be downhearted.

Its good to hear from you dear friend. Hope you are finding new jobs out there to go for. xx

Posted 10/5/2010 12:25 PM (GMT 0)
oh hon, i know what you mean... as far as you understood it back then, it was supposed to be only temporary. i guess that's what also helped you to accept it easier, cause it's not for life and supposed to work out eventually. i def feel your pain..... cuz yes, i've been there - right after the colectomy when i realized it's not working out i got really depressed, i cried 24hrs/day (i'm really not exagurating) - i cried nonstop - at home, at work, on the street, on the buss and at night i cried my self to sleep. just couldn't control my tears whatsoever. even when i woke up in the morning, there were already tears in my eyes, and it was like that every morning for about 2-3 mons! that was the weirdest, i mean how can i already cry if i hadn't woken up yet..??

but you know what..? now that i think of it... 18 mons!!!! that IS a long time, and you know, when an organ is not being used for such a long period of time it loses it's functional ability in some degree, right? BUT from what i know, it's reversable, just maybe takes a while. so maybe your rectum needs time till it regains it's functional ability. this really could be it. ALSO - very important - i think at this point biofeedback can really help you reactivate the rectal/pelvic muscles. i met a woman at the hospital who had a temp colostomy for 9 mons and before the reversal her surgeon sent her to few sessions of biofeedback, he said she must train the rectum to work again! i think your surgoen should order this for you too, esp to the fact you had it even longer than her. pls ask your surgoen about this.

i'm not sure about the fiber tho, actually i really don't think it'll be a good idea... usually fiber makes things worse for ppl with slow transit constipation even after the colectomy. if i eat fiber, i can easily get an obstruction either before or after the ileo op. i think you should really really be careful with that, maybe try just a really tiny bit (i'm really terrified of fiber - had my share of really bad experiences). and yep, i know benefiber, we have it here.

i'm so sorry you're having such a hard time and i feel your pain (((hug))). but Karen, i do think you should look into biofeedback now. this time, in this specific condition of a rectum that hasn't been used for such a long period of time, this could be the answer! i really hope so! at the same time work with your diet, but i think a low residue/low fiber diet is the right way to go.

thanks so much for your warm words. and yes, it really IS great to have a long lasting problem solved. it's not perfect and having a bag can be anoying at times, but i havn't felt this good in so many yrs, so it's worth it.

always love talking to you my sweet sweet friend!! about work.. i'm supposed to get an answer later today or tomorrow morning. could be i'll be starting tomorrow, but i don't know for sure yet.

love and hugs your way!! hope you feel good and pls keep me updated.
Posted 10/5/2010 4:46 PM (GMT 0)
Thanks Hodaya i will keep you updated.  Today has been a bit weird and i tried to work but couldnot concentrate cause my tummy felt so odd and uncomfortable.   I know i must be constipated cause of what the poo looks like - little small blobs - and then a bit like baby food - all over the place. That is  not right. 

so i had some prune juice lunchtime and this afternoon (it is 5.33pm right now), and i think the lunchtime prune juice started working at 4pm as poo was watery - i havent had watery poo since being in hospital.  so i went four times in an 1 1/2.  didnt know it was that potent so will have to be careful.  Hopefully it had cleared the constipation but who knows i think i am all over the place right now.

i know what you mean about the fibre - i will take it real slow - i have bad memories of fibre too. I will try to get what i need from cooked veg, soup and juice and porridge.

Oh Hodaya it must have been awful for you when it didnt work out for you - and the constant crying - i can believe  you.   I remember you saying you had problems with the pelvic floor??  I remember having biofeedback once - i will keep an open mind about that when i see my surgeon for my first follow up appt.  I cannot remember my GI tests for the rectum anal mammatory etc.  I think i culdnt get all the barium out i cant remember.... you think they would have said something to me wouldnt you???  I think everyone like us who have YEARS of constipation must have some sort of problem to some degree but i hope......my worst fear is there is a problem with small bowel motility as never had that tested.  Oh well cant keep worrying like this.

Also where are all the ileo reversal people on here!!??? Obviously they are ok so enjoying themselves doing something else i am thinking.....

will keep you posted as and when ..take care xx

Posted 10/5/2010 10:42 PM (GMT 0)
Hi Karen!  I kinda chuckled over your last comment about all the reversal people...I guess that's so true!  I had my ileostomy for 6 months and was reversed in March/09.  I had read all the posts about diarrhea and butt burn etc etc.  I didn't have any of that.  Much like yourself, I was really really constipated after.  I used prune juice and Milk of Magnesia to get things going.  It took a few weeks before I really found what worked for me.  When I first came home from hospital, I ate only a low residue, low fibre diet.  Mostly strained oatmeal, mashed potatoes, pasta, etc.  I didn't want to over work things in there.  Also what really helped me was drinking LOTS and LOTS of liquid...water especially.  I was so bloated and had so much pressure in there, it was really rough for awhile but once I found what worked for me it was great.  I still have to be really attentive as to what I put in my mouth and be sure that I drink enough water and get enough fibre or I get horribly constipated still ( I have IBS with constipation).  I don't know if my input helps you at all but I hope you can get things moving soon.  Also they told me to walk alot, which I did, and drink hot tea (or coffee) to help things along.  Best of luck to you!!!......Cheryl
Posted 10/6/2010 9:10 AM (GMT 0)
Hiya Cheryl

Any input is good - it helps to know i am not alone. So i guess you are living your life to the full now? Yeah i didnt really eat at all until day six after surgery and even then hardly much - i wonder if my bowel hadnt fully come awake? I was also taking Tramadol which is a very strong pain killer - i stopped that last friday. Yes the prune juice worked really well yesterday - i went about 20 times - a lot more in the afternoon/evening and twice at night. Argh its so tiring. Yes it is hard to know what to eat fibre v low fibre. i never got on with fibre over the last 10 + years - even with a bag i would get a swollen stomach. I am not doing any walking - i dare not venture out just yet and the weather is terrible but i have been doing a bit of housework and stuff to keep moving a bit.

Thanks again.
Posted 10/6/2010 11:05 AM (GMT 0)
i never had the small intestine motility test eithr. we don't have it here. i think my small intestine is a bit slow, but i'm doing ok. with each meal i combine foods that thin the stool, so far it's working ok. did you need thining foods while with the ostomy? how many times a day did you have to empty the bag? was it 1/3, 1/2 full each time? if i don't combine thinning foods with each meal i would have maybe 400-500 tops/day, like a one full bag. i don't think it's enough output for a whole 24 hrs, what do you think? with the thinning foods i have 1200/day. if i don't have at least that, i get really bloated and a horrible pain. how was it for you?

i agree that ppl who suffered chronic constipation for yrs, it's inevitable they will develope defecating disorders (pelvic floor disorders), but some have it worse than others. mine was bad enough for me to want an ileostomy.

you should ask for a copy of the report of each test you do and ask your dr to give you a detailed explanation. they are too passive to give it to you on their own. makes no sense, but unfortunately that's how it is, even with real severe cases.

don't lose hope yet, everyone is different and it could be you just need more time and adjusting your diet and maybe biofeedback.

hope today is a better day for you.

Posted 10/6/2010 11:51 AM (GMT 0)
Thanks. Yes I am trying to take each day as it comes - i havent cried today yet, and only once yesterday.

The prune juice yesterday was very potent - i went 20 times including twice in the night - watery.  I cant seem to get somewhere in between.

Today my gut feels uncomfortable - i had Shreddies for breakfast - maybe not a good idea? I am constipated again - just been to the loo and it is back to little blobs again.  what a nuisance.

Arggh i cant believe you need to still do stuff to help with your output.  I had a lot of output - even when i didnt eat sometimes drinking would start it off.  Sometimes would get up at night to empty if i ate too late in the evening.  That is why i was expecting the same after reversal - but it is so different to what i imagined it to be.  i get no gas now how strange.

I dont know the 'right' amount that should be coming out.  but at least you are doing okay now Hodaya and that is the thing - and you know how to keep it moving along. i think each time you eat, something should come out - and depending on the amount eaten of course.  Any vegetables or salads would give me watery output.

I would say I emptied it in the morning after waking, maybe again late morning depending on if i eat anything, then after lunch,then again later afternoon, then after dinner and again maybe twice more. So around 6/7 times - sounds a lot when you look at it - but never bothered me.  But i never liked the feeling of a full bag against my body - and it would bulge out under my clothes - especially after a big meal.  I would say each time it was about 1/3 to 1/2 full - it never got completely full - it wouldnt fit under my jeans!

I used to get bloated when i had the bag if i ate fresh veg and salads or ate too much - but no pain only occasional discomfort - usually if i have been a pig.

Yes i will speak about the report to them - i am sure they gave me a copy but they are hard to understand. 

Thanks Hodaya - lets see how this day goes. i so glad you are well. x

 

Posted 10/6/2010 5:35 PM (GMT 0)
shreddies are fiberous, it's whole wheat. i don't think it's a good idea. for me, all cereals constipate me.

i wish you could try pear juice (fresh squized). if you could buy a home machine to make juices of fruits and veggies, that could be great. pear juice helps me more than anything. also, 3-4 big pickled cucumbers + drinking their sour water in the can (just 1/3 glass) gives me watery D in big amounts. i have a low blood pressure, so the salt can't hurt me, i think.

sounds like your small bowel is working pretty good. there's no such thing for me as having output even w/o eating. yes, i do need to give it a push, but i find relief with simple things like pear juice and pickle's juice - it's not too bad, and after all, those are not meds :)) i also stay completely away from anything fiberous/dairy/beans/seeds. but it's so strange.. even if i eat a full meal, i won't have output at all if i don't combine either pear juice/pickles + their juice/eggplant salad with mayo (that helps me too) with the meal. i need to find more things that can help, cuz so far i found only those 3.

oh and me too, even tho i was still constipated after the colectomy, i didn't have gas either. it is strage. maybe the large bowel produces more gas than the small one..?

off the subject, i'm starting my new job tomorrow, yay! and it's also close to home, just a 10 mins walk!! i've never in my entire working life worked so close to home :))) i love it!

good luck hon, try to stay away from the cereals for couple days, let me know if it helps, hugs your way!
Posted 10/7/2010 3:31 AM (GMT 0)
Karen,
I haven't been on for awhile, but caught up a little tonight. Sorry you're having problems....since my colectomy 1 1/2 years ago, I still struggle. I'm tired of everything revolving around what to eat and what to take to help me go. I have to take miralax 2x a day to keep things going. Prune juice works for me, too. The first time I drank any I had the same results you have....went and went and went.....now it really cleans me out, but a little more at a time than the first time.

Do you feel like you have to go and can't get it out? Did you have pelvic floor issues? I'm not sure if my small intestine is slow or not (test showed no) but my doctor said he thinks it is because one lomotil will slow me down for hours and hours.

Did you mind having an ileostomy and were you happier with that, do you think? Most days I can handle how I have to live now, but sometimes it's so difficult to have to constantly worry about when and what to eat.

I hope you can figure something out for your system; I know you've waited a long time to have the reversal!

Hugs,
Janie
Posted 10/7/2010 9:39 AM (GMT 0)
Hi Hodaya

 

Wow i hope your job goes great for you!   What will you be doing - is it still typing? 

 

I dont know if i could eat the juice the pickles come in - but salads are good for thinning output definately.  I dont know when to start on salads - i had some stir fry veg last night but didnt eat much of it.  I am too lazy to juice my own fruit - i will buy it instead - can get pear juice but not sure if it will help as apple juice doesnt.

 

Today my gut feels odd and sore - brings back old memories - i still dont feel 'me'.  What can i eat if no cereals? i eat ready brek cause that it easy on tum and Special K has no fibre at all. fruit bloats me.

 

hi Janie - yes its been a while - i hardly freqnented the forum when i was well after the ileostomy.  Yes i was great with the ileo - no problems at all.  I will go back to it if this does not work out cause i cannot live my life with my bowels dictating it - had enough of that for 10 years+.  I hope it is too early to say yet - it has been 2 weeks today since the op.  i hate surgery.

 

Yes it is tiring but if you can live your life without it revolving around your bowels and you are not in pain, then you are doing ok.  I dont have pelvic floor issues but i know i could not get all the barium out with the proctogram.  Yes i do feel something is left behind but only when it is really sticky - and when i strain it is a very small amount - i think my rectum is over sensitive - dont want to go down the straining route cause my body has had enough of that in the past.  otherwise i can eliminate okay if it is loosish.

 

yeah i hope i can get through this - it is very difficult and i never thought in a million years i would be constipated. 

 

xx

 

 
Posted 10/7/2010 3:40 PM (GMT 0)
thanks Karen. i'm back home from my first day at work. was a bit hard, but it's good to go out for work. i'm a secretary, one of a team of 3 secretaries. scheduling meetings, follow up projects, type letters, phone calls etc. it's better than just typing reports all day and having no one to talk to. it was good, but i'm SOOO worn out.

i actually love pickles juice, so it's no problem for me drinking it. pear juice is totally different from apple juice - apple juice is not for thinning, but pear juice sure is. it works exactly like a laxative, but in oppose to all others i tried post colectomy, all other things stopped working after 3 weeks of taking them every day. pear juice is the only one that's effect still lasts for 8 mons now. i hope it lasts forever. try one.

i tell you what i mostly eat: eggs, chicken, cooked vegies (but not all veggies, only: carrots, zucchini, sweet pepper, onion, potatoes, sweet potatoes and eggplant. all others give me bad gas even if cooked), cooked peaches, bread (mostly toasted - works better for me when it's crispy), yogurt (bio) and icecream (the only ones from all dairy that doesn't give me trouble), pasta (with tomato sause), nuts/grains (just a handful every once in a while is ok), chocolate. that's it mostly.. oh and of course pickles and pear juice ;) i can eat fish, but i hate fish.

there are still many foods i can't eat, like all kinds of cheeses and milk, beans (including corn), fresh fruits and vegies, peanuts (those are killers), anything with fiber, olives, avocado and so many other i can't remember now.

since the colectomy its been a struggle figuring out what works for me and what deosn't. but now i know and eat only what does me good. i hope you can find the right foods for you to allow you to have normal life and not needing a bag. i think that with a right diet you have a good chance, cause i think your system works better than mine.
Posted 10/7/2010 3:56 PM (GMT 0)
Hiya glad to hear from you - yeah its not surprising you are tired - it is such a shock after being at home for a while.  It didnt take you long to get another job you are so lucky.  Yes it is nice to have some girly chat at work isnt it.

I have been trying since last January to even get temp work but nothing!  I am thinking i maybe not meant to do this work ?? I work from home legal typing which is accessed via a secure server on line - but you only get paid for what you do and you need to go fast and accurate.  i started back yesterday.

Anyhow how on earth can i go back to work outside the home now - i will have to wait till i feel better.  My tummy feels like it did pre-op days - a constant dull ache like i need the loo. 

Yes i wil try the pear juice and let you know - it most certainly tastes bettter than prune. 

The stoma nurse called me back today and said she spoke to the surgeon who said he checked my anastomosis (cause of her fear it might have narrowed) at the time of the reversal and it was fine.  He and she feel it is too early to worry about things and I need to give it a few months at least - six months ideally -before taking drastic action of having the bag again. Though they respect every individual decision if they dont want to wait that long if they are suffering.

So it is a waiting game - i do hope the constipation gets better by itself.  i have an outpatient apointment 29 Oct which is not far away - it is a worry cause i go to the loo every hour or two right now. 

xx

 

Posted 10/7/2010 4:54 PM (GMT 0)
My take down to regain continuity was on sept 20, just returned from doctors office post op and was told most people experience diarrhea. In my case i have constipation because the colon still hass to wake up and secret mucus. He recommended miralax 2 times a day! eat fiber and drinks lots of h2o
Posted 10/8/2010 9:20 AM (GMT 0)
Hiya welcome

So you only had your op a few days before me.  I was never told the bowel can take two weeks to wake up ? I am starting to eat more 'roughage' now in the way of more veg and i will start on salad at the weekend.  however i dont know about you but anything raw e.g. salad/fruit and higher fibre foods even after my ileostomy would make me bloat/burp and generally feel rather uncomfortable but did give watery output. 

Had prunes this a.m. and yes i feel bloated. confused   will stick to prune juice i think.

I have heard of lots of people on here taking Miralax - i have not heard of it over here in UK but i just found out it is an osmotive laxative.

So are you not 'going' at all since your op?

Posted 10/8/2010 1:13 PM (GMT 0)
i know what you mean Karen, i used to work from home for a while (it was about 9 yrs ago) and it wasn't enough income. oh i hope you can get as lucky as me and find a job you like. yeah, i found this job pretty quickly and am thankful for that. the girls are nice, they are also new to the office, so we're all starting new together. it is a plus.

after my colectomy on Aug 2009 i had lots of bms for the first 2 mons, but i didn't care, as long as things were flowing easily. but when things started to go wrong, it was very hard holding on to my job - my bowels were again dictating my life, just like before the colectomy. it is much easier with the bag for me.

pear juice is actually really yummy, i love it. i hope it helps you. i really hope time will improve things for you, i know some of the girls on total colectomy parts had it rough at first, but after a while it worked out. for some of them it even took up to a year to start working out, but it did eventually. beats me how this whole thing works..??? hope you're doing good today. ((hugs))
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