6 weeks post ileo reversal and no real change

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2much2bear
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Date Joined Mar 2008
Total Posts : 624
   Posted 11/2/2010 11:01 AM (GMT -6)   
Well i am nearly six weeks post ileo reversal and still dealing with constipation tummy ache and all - its a bit like going back in time to before but different.
 
i can take the prune juice twice a day and go from being watery and back again to little blobs in a matter of hours ... so it is not really clearing it up. 
 
Does this mean i will be like this forever? mad    Will i need to go back to bag again - i was fine with the bag but i feel really miserable to have to do so and another op or is it still too early and will things change for me yet. 
 
i still 'go' 12 x plus a day and twic at night - which is the worse part as always hard to get it out cause it is such a small amount.  i am so fed up right now. i tried milk of magnesia today but it has the same effect as prune juice.
 
any advice from those who can relate woudl be most grateful.
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Loop Ileostomy
23 Sept 2010: Ileostomy reversal

Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 11/2/2010 11:45 AM (GMT -6)   
Karen,

I wish I had an answer for you. I had my surgery back in March 09 and I still deal with the issues you are. I take miralax 2x a day and that helps alot, but lately I've also needed prune juice and enemas almost daily to get comfortable. I still go at least 10-15 times a day because of the miralax, but without it I feel like a I have a huge blob in my abdomen and in my rectum. If I eat a diet without alot of bread, pasta, etc. I'm better, but when I add those things (and lots of sweets like I have this week) it's horrible. I was lying in bed last night thinking that I'm still obsessed with pooping after all this time. I'm so afraid to eat when I'm out away from home because either I will have to go several times small amounts (and difficult to get out) or I won't go, but will have the pains and rectal pressure. It's really no fun.

Does it matter what you eat? If you don't drink prune juice do you go at all? I've seriously wondered if I'd be happier with an ileostomy but it also scares me. I know I have a small rectocele and still wonder is the STARR procedure would help. I know how discouraged you are, because I feel the same way. I'm not scheduled to see my surgeon again until next year. I saw him several months ago and he said "why don't you just stop taking anything and see what happens?"...which is what I did for 6 months before trying miralaxl. He totally doesn't get it.

Maybe things will get better for you...it hasn't been that long. I'm sure I'm as good as I'll get though:(

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 11/2/2010 4:55 PM (GMT -6)   
I was like that just recently when I had adhesions. I have my pouch for 9 years and you should not have problems like that. Your doctors should run more tests.
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 11/2/2010 6:00 PM (GMT -6)   
I'm not sure about Karen, but I know I have pelvic floor dysfunction which contributes to my issues. Since my colectomy I had a second sitz marker test as well as defocogram....I failed the defecogram after surgery but not before. Go figure. Things are really hectic with me now dealing with an elderly mom with memory issues, but eventually I will get more opinions. I'm sure I don't have adhesions; I never had abdominal surgery before and this was done lap. I just have very slow motility and pelvic floor issues....and I don't always eat what I should:(

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 11/3/2010 4:46 AM (GMT -6)   
Hey Janie
 
I sure dont want to look back in a year's time and find myself no better!!! I dont know how you cope?? but i suppose you know no bettter???  Yeah could still be early days for me - who knows.
 
I started taking prune juice about 2 weeks out of hospital cause i felt i was constipated with small little blobs and all - a real surprise - wasnt expecting to be like that at all.  So yes i still go without the prune juice but not efficiently i feel - though the prune juice is very potent.  I NEVER had issues with the ileostomy and will not hestitate to go back to it if, in around six months' time i am still like i am now.  I just cant function like i did with the bag - pain bloating worrying about my bowels....good grief i just cant do it - 10 years i did all that and i WANT A LIFE!!
 
Yeah i also have elderly parents who depend on me too - one is in a nursing home the other is getting more frail and is depressed - though i also have a life and i am determined to make up for those 10 years - i spent 18 months with the bag and all i did was .... NOTHING except monotonous life stuff and argue with my husband all the time... i wish i enjoyed my health a bit more and didnt take it for granted.... guess trials of life make us realise these things and take stock ....
 
No i havent noticed what i eat affect me - i have tried benefiber - nothing..... fibre.... nothing ... in fact fibre is not my friend...i eat what i like and nothing either way makes any difference good or bad ...except prune juice ... which gives me watery output about an hour after taking a small glass full.... less then it dont work.
 
I remember my defogram i had before surgery -  i only expelled 50% i think  - but no one said anything about it before the op.  I have my first follow up appt on 12 nov so will see what happens there.  xx
 
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Loop Ileostomy
23 Sept 2010: Ileostomy reversal

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 11/3/2010 8:09 PM (GMT -6)   
Karen, it is discouraging I know. I guess I've just been dealing with it. I just make sure I don't eat during the day unless I'm home and when we go out at night, I take a lomotil to keep me from having the urge to go because having the urge and not being able to go is pure misery. then I come home and drink miralax or prune juice. We went on a 3 day cruise a couple months ago and it just isn't fun the way it used to be....I'm not sure what I'll do. I don't want more surgery and I don't want a bag, but eating is totally changed for me now. HOWEVER, the other night when I was feeling sorry for myself because it just isn't what I expected, I remembered before surgery when I would take massive amounts of laxatives every 4 or 5 days and be miserable for hours and hours until they worked, and sometimes they wouldn't....so even though things aren't great, at least miralax and prune juice daily makes me go. It could be so much worse. I'm going to see what we're doing about my mom before I go back to the dr.

It really is difficult with our parents, isn't it? My dad died 20 years ago, but my mom is almost 87 and still lives alone, but she's getting very forgetful. She's been the most incredible mom in the world and we will either move in with her or move her in with us. It's just a hard decision because we live in a condo and she doesn't like elevators..and of course she wants to stay in her house and doesn't feel like she needs us yet. I'm not sure how much longer she should be alone though.

Good luck with your dr. appt...I'll be anxious to hear what he says!

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 11/4/2010 8:52 AM (GMT -6)   
Hi Karen & Janie, I am sorry that you are both having problems with your reversals. Janie, you said this is very hard to live with and yet, "you don't want the bag." Please be truthful, what was the worse thing about living with the bag? I get by day to day living with my subtotal colectomy but it seems I have t be aware (rectal pressure or fullness feeling) almost all of the time. I am strongly considering get an ileostomy but I need to know as much as possible about living with a bag before making that decision. I just don't want to go from the "frying pan into the fire" as they say. Can you please compare/contrast your life with both situations?

I know what both of you are going thru with your parents. My dad is 89 and has Dementia, my mom is 82 and has many problems of her own. It is difficult knowing how to best take care of them!

Gilda

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 11/4/2010 9:03 AM (GMT -6)   
Hi Gilda
 
As i have said before - living with an ileostomy was a walk in the park for me compared with the tummy ache bloating constant worrying about bowels etc that was my life. 
 
Janie never had a bag - she went straight into the colectomy with ileorectal anastamosis.  i however had to have a temp ileo due to prev surgery - which was a real blessing for me cause i experienced life wihtout pain for the first time in 10 years...
 
i could do what i wanted when i wanted.  nothing restricts you with a bag at all ..except wearing a bikini and may be sleeping on your tummy and lots of wind which would expand the bag mostly at night..... but HEY who cares - i ws free!!! i could just 'get up and go' as it were.  I ate what i wanted no problem. 
 
I am only 6 weeks post lleo reversal so i am taking it slowly before i decide to go back to bag. 
 
hope that helps your decision - i had eight months before surgery coming to terms with a bag but i knew it was a temp solution...however I took to it like a duck to water as i felt so good...AND i wouldnt have known that would i had i not had the temp ileo...the unknown is always scary but in the end you just do it cause life is unbearable.
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Loop Ileostomy
23 Sept 2010: Ileostomy reversal

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 11/4/2010 12:53 PM (GMT -6)   

Gilda,

Karen is correct, I never had an ileostomy and when I said I don't want one, it's more a fear of the unknown.  I know Hodaya is very happy with hers, and Karen says she didn't mind one at all.  I have no idea how I would adapt, but what I should have said is that I'm sure I don't want more surgery, and I'm not sure how well I'd deal with having a bag.  I have alot of the rectal pressure and feeling I'm not empty also.  I've been taking miralax for a year now and while it still works, it doesn't work as well as it did when I first started taking it.  I actually had a small bowel follow through done before my colectomy and it was normal, but my colon surgeon said he's sure it's slow because if I take one lomotil it will stop me from having the urge to go for hours.  He said alot of people have to take 2 or 3 at a time to slow them down.

I just don't know what to do.  At first I really liked my surgeon, but as the constipation started again, he pretty much blew me off....he said surgery was a success (I didn't die), I had an eating disorder (when you don't eat because you have pain it's a sign of an eating disorder)...so I'm not sure if I'd go back to him or not.

Decisions, decisions.....and yes, dealing with elderly parents is very difficult, not to mention heart breaking.  My mom has always been so perky and lively and while she still is alot of the time, I see her getting old so quickly now.

Janie

 


Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 11/23/2010 10:14 AM (GMT -6)   
Jumping in here - this question is for Janiepain...

I've been trying to find information on anyone who has had the Sitzmark test where they swallow 5 capsules instead of 1. Someone on here mentioned to me they thought you might have had it done that way, and I wanted to ask you about it.

If you did have the 5 capsule test, how did they interpret those results? I know with the test that has only 24 markers, it's a certain amount remaining that indicates CI, but how do they figure it out if you have say, 120 markers in there?

Any info will help, thanks a bunch!

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 11/23/2010 9:38 PM (GMT -6)   
Alibee,
My sitz marker tests (I've had 3) were all the same; I took one capsule a day for 5 days. The first time I had x rays every other day, but the last two tests I didn't have any x rays until day 6. It was easy to interpret my results because I had all 120+ remaining...I didn't have any bowel movements the entire 6 days. When they take the xray, you can see exactly where all markers are located....if you've passed any, then they just obviously won't be there.

Good luck....do you have colon inertia?

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 11/23/2010 10:34 PM (GMT -6)   
Hi Janiepain! Glad you found the post.
And thanks for the information.
First, my old doctors said it was "just IBS"...then my next doctor said chronic constipation, and I finally went to a GI specialist who actually listened to me (the one who is having me do the tests) and the paperwork she gave me to to take to my next appointment, all of it says, "suspected colonic inertia". She said, she has the feeling my colon is "slow as heck".

So she thinks that's what I have but we're doing the Sitzmark to see for sure, and then the manometry/breath test/etc...to rule out other issues as well. This colon has been making my life hell since I was a baby...I am hoping they figure out what is wrong with it soon, so they can either fix it, or just get it out of me. I'm sure you know, but it really has taken over my life and I decided a few months ago that I am losing days I'll never get back because of this awful colon I got stuck with. I asked about long-term options, should it turn out that I do have CI, and she talked about surgery - that if things kept not working we would decide if just getting the non-working colon out would be the next step to improve my quality of life. Even laxatives fail to work now, and I just had a colonoscopy and had to drink THREE preps over the course of two days, in addition to dulcolax, and the right part of my colon was still not completely clean. So I know there is something that's just not working. I also am bloated constantly, especially after meals, when I actually look (and feel) pregnant. Is that a symptom of CI?

I dread the sitzmark test just because I know I will be very uncomfortable, but if it will help me figure this out I will suck it up.

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 11/24/2010 11:39 AM (GMT -6)   
Alibee,
I totally understand everything you said and how you feel.  I didn't have the surgery until I was 53; I was constipated my entire life, but I took laxatives every 5 days or so and emptied out and then I'd be good for a few days.  When I had my colon removed 1 1/2 years ago it was 8 feet long, so there was obviously plenty room for the food to sit for a few days!!
 
I hope things work out for you...what do you take now to go and how often are you able to go?  I NEVER, and I mean NEVER went without taking laxatives for over 30 years!!
 
Good luck,
Janie

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 11/24/2010 8:58 PM (GMT -6)   
Hi Janie,
I cannot go either unless I take something, and it has been a few years since the last time I just didn't take anything, so I'm not even sure how long I would go without "going"...I am always too scared/uncomfortable to find out. I had some minor surgery (not GI related) a couple of years ago I think I got to about 7 days when I caved and had to take miralax and then dulcolax a few times before finally getting anything to come out. And a few months ago I only went 3 days without going and was seriously bordering on impaction...I had to take dulcolax and use enemas, and what came out felt and looked exactly like medium sized stones and pebbles, and I was in such pain. Now I take miralax and dulcolax once or twice a week, but on those days I also have to stick to a diet of soup and jello, or else it doesn't work well at all.
I feel like superwoman on the rare occasions that a laxative will really clean me out, and it lasts for a whole day or two until the laxative is out of my system and my belly goes back to being lazy.
It is a neverending cycle and I have to plan out when to take laxatives based on what I will be doing that week, or if I go away for the holidays, etc. If I take them every day they start to work less and I have to keep increasing the dosage so lately I have been trying to only take them every 3-5 days. But sometimes I just feel so awful. If I didn't do/take anything to make myself go I don't think I would ever go!

How are you feeling post-colectomy?
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