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Bloating and constipation after ileostomy reversal

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Posted 10/13/2010 9:56 PM (GMT 0)
Hi all

Hoping you can help. Firstly a quick history:

I'm 38 years old, very fit (or at least I was) triathlete and runner and mum of 2 boys. Always had a very healthy, high fibre diet and been an athlete all of my life. No prior symptoms or problems until:

June 2010 - Peritonitis caused by perforated diverticulitis - had no idea anything was wrong, so huge shock. Rushed into hospital in middle of night with suspected appendix.
August 2010 - Anterior resection to remove large part of colon and rectum (laprascopically) and formation of temporary ileostomy
October 2010 (2 weeks ago) - Ileostomy reversal - op went well, but suffered from paralytic ileus - so had 6 days in hospital

I was expecting to come home and have big problems with diarrhoea but it's been quite the opposite. I'm constipated, my tummy is still enormous and very bloated and unless I take senna nothing happens. I've switched to a high fibre diet - increasing fruit, veg and also grains and am drinking lots of water but nothing is making much difference. I'm trying to be active as possible and walk as much as I can. My consultant is fantastic and I'm very happy with him, but he says it'll just take time to go down. I honestly look like I'm 6 months pregnant! I've seen him only today and he says just to give it time, but at times it's so swollen it pulls on the wound and makes it very sore. I also hate looking so huge and it's getting me down on top of having had 3 operations since June.

Has anyone else had this problem and when can I expect things to improve? any advice, empathy or words of support most welcome...

Thank you :-)
Posted 10/14/2010 1:13 AM (GMT 0)
Ironmum
So are you reconnected?  For me fiber is a no no, causes exactly what you described...so get off of the fiber for a bit to see if that helps...sorry your feeling so bad.

Leslie

Posted 10/14/2010 7:09 AM (GMT 0)
Thanks Leslie - yes I am reconnected.. sorry I didn't make that clear.

Interesting what you say about fiber.. have you been reconnected too?
Posted 10/14/2010 9:30 AM (GMT 0)
Hi Ironmum,

Due also to a diverticulitis perforation I had an emergency operation and the formation of a colostomy. I had the colostomy until February this year when my colon was rejoined with an ileosotomy replacing the colostomy to allow it time to heal. Last week I had the final operation to take down my ileostomy. My rectum is still in place.
What you have described is exactly what I have been going through with only a very small bowel movement taking place 5 days ago and once again today. The stool is quite solid as opposed to everything I had read and was warned about by my surgeon with regards to diarrhoea. I too am feeling bloated and am attempting everything I can to alleviate this situation. Overall I am very happy with my progress following the op but will be even happier when my bowels are functioning correctly again. I will be seeing my surgeon next week.

Take care
Ken
Posted 10/14/2010 9:47 AM (GMT 0)
Hi Ken
Sorry to hear you're going through the same thing. Frustrating isn't it!? Do let me know how you get on. Very little 'action' my end - even with high fibre diet, senna and increased fluid intake. Tummy still huge and swollen (although medically 'soft' apparently)! Feels like there's more going in than coming out! don't know where its' all going, but hope things improve soon.

Keep in touch
Posted 10/14/2010 7:08 PM (GMT 0)
Ironmum
Yes I was reconnected right away, and still can not handle fiber, fiber is not my friend.  It causes me pain and bloating...

Leslie

Posted 10/15/2010 2:27 AM (GMT 0)
I had the exact same probem!  My bowels wouldn't wake up at all!  I had my reversal in March/09 after having a loop ileostomy for 6 months.  When I first got home from hospital I ate very light...just very bland food...no fiber.  I drank lots of water though.  Nothing was happening so I slowly increased other foods into my diet.  Eventually I had to take Milk of Magnesia and prune juice to get things going.  Otherwise i was plugged solid!  I did alot of walking around the house and drank lots of water and hot tea.  It was very slow going and I felt horrible but once things started moving it was much better.  i know what you mean about the bloating and pulling on your incision. It's miserable.  I hope things get going for you VERY soon!  I still struggle with constipation but it is manageable with morning and evening bran, ground flax seed on my cereal...plus LOTS of water.  Also, When I went to see my surgeon around 13 days after surgery to have staples removed , he told me that sometimes a glycerin rectal suppository helps get things going from the other end whereas it doesn't help by ingesting orally.  This also helped.  HOpe you feel better soon!  ....Cheryl
Posted 10/15/2010 5:05 AM (GMT 0)
Hi Ironmum,
Well what a difference a day makes. I went to bed last night no better off and rose this morning feeling very bloated and wondering when this would all end. I sat down and had my morning coffee and within 10 minutes I could feel my stomach rumbling around with the familiar feeling of wanting to use the toilet. Well things certainly did move and I have also had another bowel movement this aftternoon. I had not tried any laxatives as such and I just tried to eat foods that would aid the process and drink plenty of water. I just get the feeling that it takes a while for your colon to get back into synch again and it probably varies with each individual. Hang in there Ironmum help is on the way!!!!

Ken
Posted 10/15/2010 9:07 AM (GMT 0)
Hey Ken - glad to hear your good news! hope it continues

Thanks Roddiesgirl - great advice. I'm trying to be active as possible - walking the dog 40 mins per day etc - although not running yet ;-) so hoping that will help. Things are moving 'a bit' but seems to be more going in that coming out! it feels like there's no urgency and that things just aren't working mechanically - if you know what I mean. I'm worried the nerves or muscles of the bowel won't ever be the same. Transit seems ever so slow - even though I'm now missing half my large colon - just doesn't seem right.

Anyway (sigh) I'll hang in there and just be patient. Frustrating!

Thanks for all your words of support x
Posted 10/15/2010 9:29 AM (GMT 0)
Hi Ironmum

Sorry to hear of your plight.  It seems you were healthy and no medical history prior to the perforation - you never had constipation before???

You had the ileus so it could be the bowel is not yet happy with too much food etc.  It is hard for a lot of us to comment as we had our entire bowels removed and left with the small bowel connected to rectum.

Either way give it time and dont eat hard to digest foods just yet cause your bowel is still in the process of waking up it seems.  If all else fails and after a couple of months you are still suffering then your dr needs to do more tests on your large bowel. 

Posted 10/15/2010 9:45 AM (GMT 0)
Hi 2much2bear

Thanks for the advice. No never had constipation problems in my life EVER - quite the opposite in fact. Always plagued with runner's trots too. Although now with hindsight, there were probably symptoms of diverticulitis, I just didn't realise.

I think a lot of it is related to the ileus (which was awful btw) and as you say just it's taking time to wake up - it's only been 2 weeks after all. I know I'm lucky to still have some of my large colon left, but I wasn't expecting to feel like this, I'm still really young (or at least I think I am ;-)) and I'm desperate to get fit again and back to running marathons. Everyone said I'd be 'back to normal' after the reversal and frankly I feel like I was better off with the Ilesotomy!

I'm trying to be patient, but it's frustrating and I'm worried this is how it's going to be forever.

What is slow transit constipation?? that's exactly how it feels..

What tests should I be asking the Dr to do?

I'm due back to see him in another 2 weeks. In the meantime, I'm back on antibiotics as having night sweats :-(
Posted 10/15/2010 12:54 PM (GMT 0)
oh gosh sorry to hear that....

slow transit constipation is exactly that - the transit of food moves slowly through the large bowel and sometimes hardly or not at all.  When it becames unmanageable and diet and/or laxatives are not giving relief then that is when surgery is the only option. Took me years before i knew i had this complaint.

Well, a good dr will do a sitz marker test (or 'transit study' - i dont think you need any other test seeing as this is a new situ for you) which you take do to see how your bowel is performing.  They xray you after four days or so to see where the markers are in your bowel.  you must not take laxatives during this process.  All countries/hospitals do things different so it could be they xray you daily.

Anyhow i hope it doesnt come to that for you.  You sound so fit - these problems certain make one feel depleted i know.

keep us advised.

 

Posted 10/15/2010 4:56 PM (GMT 0)
so glad for all your help and words of advice... reading the posts on here so many have much worse problems

glad to have found you all!

will keep you posted

thanks x
Posted 10/15/2010 5:20 PM (GMT 0)
not at all - what you are going through is tough and not to be underestimated - we are all in this together. x
Posted 10/18/2010 2:29 AM (GMT 0)
Hello!

I cannot believe how different everyone's stories are about why they had an ileostomy and how their bodies were affected after the reversal!  I am curious, for anyone out there, is there a difference in how the body reacts after the reversal depending on how much rectum/colon is left?? 

I am scheduled to have my ileostomy reversal in a week!!!  2 years ago, while 31 weeks pregnant with my first child, I picked up c-dif (hospital born bacterial infection) at age 30, and the end result was an ileostomy.  (My 2 year old is perfect by the way!)  The doctor had no choice but to do an emergency removal of my colon but he was able to leave 15 cm (part of the colon and rectum).  I have been waiting for the past two years to save vacation time and sick time so that I could have the reversal.

I too like to run and am very active, obviously with a 2 year old!  I also have two step-sons, 14 and 9! 

I guess my main question is how do you know what to eat after the surgery?  Should I have the surgery?!!  I have read quite a bit about symptoms such as diahrea, burning and now constipation!  I'm so scared!!  Also, many people who have posted comments had an ileostomy as a result of colon cancer.  Does that play a part in how long it takes to get your intestines running again??

Any comments or suggestions would be appreciated for those of you who have already been through this process!!!!

Thanks!

Posted 10/18/2010 3:04 AM (GMT 0)
Hello, scaredpoopless

So I take it they are going to hook you back up.  Mine was done right away.  At first you do go to the bathroom bout 8 to 10 times a day with just fluid, then for me any way it got less and less times going, then it starts to kind of look like a fluffy type of sm stool. I never even when I was in the hospital or at home never once had to get up in the night to go.  Which my doc said was a bit unusual, but I liked it but when you get a urge to go...run and go right away.  Then that too gets better with time.

But becareful on eating...they will tell you to go slow and eat often..for me I still cant have any raw vegies or salad, dont like what it does to me.  I eat canned peaches, or cooked carrots and celery.  I can eat a few bites of a bananna a day without it killing me but if I eat a whole one, my intestines do not like it.  So you just have to go by trial and error...  I eat chicken, turkey, mostly, easy to digest.

So best of luck to you I am sure you will be just fine...but I never had a ilo, or stoma so I dont know if that makes my experience different than theirs...

Leslie

Posted 10/18/2010 9:31 AM (GMT 0)
Hey scared poopless (what a name!)

There is a fantastic chance you will be absolutely fine - you have no history of bowel issues (??) and you have 15cm of your large bowel and your entire rectum.  

How have you found the ileostomy?? What an experience you went through giving birth and then having to have such drastic surgery - must have been very hard for you especially if you have been healthy all your life.

Be positive - the good news is you can change things with diet if you need to - also give it time cause you have had the ileo for 2 years so your bowel will need time to sort itself out and may be all over the place for several weeks. 

 

Posted 10/18/2010 10:38 AM (GMT 0)
Hey scared poopless (don't be!)

As 2much2bear says, you have every chance things will be absolutely fine. I'm sure for everyone who posts on here with problems there are twice as many who don't enter into forums because they're absolutely fine with no problems at all. So glad to hear your baby was ok after all of that. You've been through it haven't you!? I only had my ileo for 8 weeks, so it's difficult to say how you'll be but given you still have a good chunk of your colon, you might be surprised.

Interestingly, after a course of antibiotics and a box of laxatives my tummy is almost back to normal size, the night sweats have gone and there's been some 'action'. There must have been some sort of infection there I think as I certainly feeling a lot less miserable now! I'm also doing a food/symptom diary to figure out the best foods and what works and doesn't. Porridge seemingly is a no no ! don't yet know if that's due to the milk with it, the insoluble fibre or what.

Anyway, it'll be interesting to see what happens after I finish the antibiotics and reduce the laxatives... will keep you posted! Seeing the consultant again in 2 weeks.

In fact I'm feeling so good today I'm just off out for my first little bike ride! :-))

I'd say definitely go for the reversal - you won't miss it when it's gone believe me!
Posted 10/18/2010 2:39 PM (GMT 0)
2much2bear, I have been following your story for sometime. I also have a temporary loop ileostomy for colonic inertia and obstructive defecation syndrome, mainly anismus and intussusecption. My doctor removed some of my colon, removed the intussusecpted part of my rectum, and hooked me up to a temporary loop ileostomy. My life is SOOOOOO much better and I feel like a million bucks. I have lots of energy, can eat more normally, and don't spend 3 to 6 hours in the bathroom everyday.

My doctor said I will need the remaining colon removed before I can have the take down. Now, I don't think I ever want the take down because I am loving life with my friend, my stoma. LOL

How are you doing now without your stoma? How are your bowel movements? Thanks, Tracy
Posted 10/18/2010 3:24 PM (GMT 0)
Hiya Tracy

I am so glad you are doing well - isnt it a relief?!!

I too was doing great.  However,  I am just over 3 weeks post ileo reversal  and i am contending with those horrible symptoms as per before the colectomy.  I am feeling bloated uncomfortable and realised i was constipated a week after surgery...not what i expected. However i am going to the loo on average 12 times and once or twice at night.  BUT it has changed and sometimes i 'go' a lot more in a sitting whereas i was doing just a a couple of eggcup in each sitting just a week after surgery.

i know i am constipated because of the consistency and the transit of food through my intestine seem slow (12 hours) and of course feeling real uncomfortable.  I started having prune juice morning and afternoon a couple of weeks ago, but it hasnt cleared up the constipation - my bowels go from watery to constipated within hours. i was in a bad place for a couple of weeks emotionally.

So yes it is a hard choice but my stoma nurse said to give it 2 months to settle down and then they prefer to give it 6 months altogether before any decision is made to go back to the bag.

However, i see you have pelvic floor isues and anismus - if that is correct then you may still have problems - like Janiepain and 2bColonfree.  However Janie is managing with laxatives i think and 2bColonfree (Hodaya) has now got a loop ileostomy after the colectomy didnt help her..

It sure is hard but at the end of the day it is a choice and you need to weigh it up - what does your surgeon think about the pelvic floor issues affecting the take down?

 

Posted 10/19/2010 1:08 AM (GMT 0)
answers4me2
Its so cool that your loving life.  I too am feeling great so as long as I don't piss off my intestines everything is going well.  For some reason last week I got a idea which was not a good one that if I ate everything that will make you fat all the goodies...I would eat at night up till I went to sleep even ate when I was full...to see if I could gain some weight.  Well all that did was piss off my intestines and I lost 2 lbs...so never again.

I have reduced my stress and that helps alot but as some of you know I have a step son who cut me out of his life when I had my surgery...I guess someone told me something when I had just got out of surgery and I told one of his friends what was told to me....I had no idea....I was so medicated that I do not remember the first 3 weeks , I one have a few bits that I do remember.  Well he thought I did it on purpose and cut me out of his life and he has my grandaughter who just turned 2, who I dont get to see either.  Well they just moved back to town where I live and they have been here 3 weeks and finally someone told me that they were here....  My son is on drugs, and he wont talk to me or have anything to do with me.

Now that I know he is so close,  its just killing me.  I know right where they are and cant do anything, I just want to go there but he is holding on to his anger.  My grandaughter just had her 2nd b-day and I did not get to be with her, he did not invite me to his wedding...this just sucks.  How do I keep myself from going there?

I have been his mom for 24 years and for him to be this way its all drug related...I know but he knows that of anyone who would help him is me...and he just has a hatred for me that kills me.

My daughter says mom, he dont give a crap so dont worry about it.  But she is not a mom yet, I love all my kids wether I gave birth to them or not.  I already lost his brother when he was killed in 2000 I don't want to lose him too...  I am so afraid of running into him because this is a sm. town we live in, and I don't know how I would react, probably run off crying ....god why does life have to be so hard?

Leslie

Posted 10/19/2010 9:41 AM (GMT 0)
Hi Leslie

Oh you are so lucky you are well...

Sorry to hear about your stepson and i dont know the full story...  But I have heard it is good to smooth things over in a well thought-out letter rather than trying face-to-face where things can get heated...tell him how you feel...your love for him...your angst because you made a mistake ...how sorry you are etc....  If all you do is say how you feel, and that you are sorry and wish to make amends then that is what you can only do.... dont try to win him over forcibly but hold out an olive branch..maybe invite them over for lunch or something...dont force it.

I dont know much about drugs but not good for the kid to see i am sure, but you need to tread softly so you get to see your step granddaughter... he may soften towards you hopefully.

 

Posted 10/19/2010 5:06 PM (GMT 0)
Karen, did you have to release rectal mucous when you had your ileo? Because I am not releasing any mucous, even with an enema and just wondered how normal this was. My doctor doesn't seem worried, but this again makes me think my rectum still does not work??? I don't want to feel bloated and miserable like you are now. NO WAY. I am going to talk to my doctor about just keeping my loop ileo. I have a small parastomal hernia with this loop. Did you have one of those? I will require more surgery eventually no matter what I decide. Thanks, Tracy
Posted 10/19/2010 5:51 PM (GMT 0)
Karen,  I have done all that, he changed his number, he will not ever respond to my emails, nothing..so I talked to a friend of mine who is a minister, and he says I am just going to have to sit and do no more..he said untill he gets out of that cycle he is in, there is nothing you can do or say.

I have written probably a good estimate is fifty emails...Have a pain doc appt today, and my insurance does not cover that doc so its out of pocket for me....bummer as I dont have enough money to live on as it is..645 a month sucks....  so I hope my energy continues to get better because I have to get some kind of a job soon.  I have not worked in 7 years...so even when I send a resume no one responds....

Have a great day

Leslie

Posted 10/20/2010 9:20 AM (GMT 0)
Leslie

so sorry to hear that -  I supppose the minister is right and just hope love finds a way through to him...i wonder if you have any rights here?  not sure really as he is your stepson.

Yeah it must be hard with no money - i dont know the US system with healthcare and such...i do hope your pain goes away and i cant believe you are not covered for that.

Well if you are well i am sure you will get a job soon...even after seven years dont give up - i wasnt working for 14 years after having kids - it is a confidence thing too but you will get something i am sure. 

you too have a nice day x

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