ileostomy reversal how long does it take to settle down

Oh Maggie.. you poor soul :-( this sounds miserable, but you sound like you have such a great attitude and it's helping you through. Sounds like you're doing all the right things.

I really don't know what the answer is regarding your bowel, but wouldn't be surprised if the chemo treatment had something to do with it. Maybe someone on here might be able to help with their experience?

It will probably take a little while for things to settle down, but it's been a few months now hasn't it? January? I did find something similar and had what I can only describe as 'incomplete evacuation', constipation, bloating and pain after my reversal. No-one could really explain why apart from the theory it may be some sort of nerve damage or dysfunction throughout the bowel, where the peristalsis was disturbed. I never had diahorrea though.. mainly constipation and just inability to 'go'. In the end I gave up and begged my surgeon to put the ileo back.

I'm not sure what the answer is for you, but just wanted to let you know I'm thinking of you. Hope you find some relief soon. Don't just suffer though.. speak to your doctor and see what medication they can offer you to help? HUGS x

I don't know what else to say.. just that I'm so sorry you have to endure this :-( I know this sounds cliched, but have you got anyone you can talk to? a therapist or counsellor? can your Dr refer you or have the given you access to anyone?

I can't begin to imagine what you're going through :-( so sorry hun x

Dear Sarah, I will be seeing my oncologist tomorrow and I am going to let him know about the pain and the bowel problems, he is a liver specialist and will probably send me off to a bowel person, goodness knows how long it will take, it is very painful tonight as my movements are very small and thin, I feel bloated and have heaps of stabbing pain where I had my reversal, it always happens when I get bloated then I am up all night doiong dribs and drabs, I hope it is something simple, like irritable bowel or whatever, I am just scared cause these tumours I have can grown anywhere it started in my pelvis and has now advanced and metastasized to my lungs and live, it scared the liven daylights to think one could just appear and of course it is possible, I am terrified I will be told I have tumor in the bowel or bladder or kidney, my poor organs they are so healthy and perfect, I have just been invaded by this thing, I just have to be brave and take one day or moment at a time, this is so hard, thank you for your help, just to know someone is listening is helpful. Maggie

hello sorry to hear of your plight.  i wonder if not eating or drinking after a certain time in the evening?  also cutting back on the fruit and see what happens.  or you may need to go more during the day and upping the fruit?  its a time game with the bowels and seeing what suits.  i was constipated with my reversal but even then still had to get up once in the night  to go to the loo, but not every night.  i used to drink prune juice to clear me out or i would go dribs and drabs all day with pain. take care. x

Did the doc check for a stricture (narrowing where they put the small bowel onto your rectum)? Good luck. I feel for you. Rosemary
PS that must be awful with chemo too. Hang in.

Hi everyone, the doctor told me he thought I was constipated and the try to take maxicol, I did and it worked for that day, now I and back to where I was, I eat really well and the stoll is soft in the lower bowel, but for some reason it is very difficult to move, I think I might have some nerve damage where they damaged and tried to repair the large bowel as I don't really have any sensations until it is almost to late, I have repeated asked for help from my doctor and this is the only thing he has suggested, with the sort of tumors they think I have, they can develop anywhere and it is very scary, I am not confident with my doctor as he tends to wave his hand at me and fob me off, I believe he had put me in a the dieing category and doesn't really care every time I ask for a test or try to discuss the natural medicines I am taking he does this and this also scares me because so natural medicine stop chemo from working and I am not sure what they are, they only help I have is you, my pharmacist and the internet, my pharmacist just looks it up on line anyway, he is not an oncologist, but my doctor is and he wont listen he just laughs and throws his hand in the air like I am a naughty child, it is very frightening, it is easy to say change doctors but in this country you have to go to your GP to find out who these doctors are as she has no clue, they don't seem to even know what resources are available to them, I had to have a heart check last week as they said the chemo I am on can really damage your heart and no-one haas ever had more than 3 of these chemo's and I am on my 6th and they told me the earliest I could get in was 3 weeks, when I got home I opened the phone book and found a heart centre across the road for the hospital my doctor works at and called and got in the next day, no one at launceston oncology was even aware there was a heart centre there, it is really not good enough is it? I had chemo yesterday and I am to have my cat scan this week and my doctor asked me to have a cat scan this week and didn't give me a request form for it, it is the second time I have had to call and remind him to do it, I feel like my life and care are in my hands and I am not qualified to make the right choices, I wont stop taking my natural medicines as I think they are the only things keeping me alive, I will have to find a way to find a good oncologist, maybe in another state, my doctor fobs me off even if I ask about other treatments or tests, I haven't even had a biopsy of the so called tumors so they are just guessing and looking at blurred pictures from a cat scan, the chemo I am on has never worked to shrink anyone else's tumours, he just wanted me to have it to fill in a protocol so i could request a maintenance tablet which he says will keep me alive for 12 months max, but the chemo has shrunken and the tumours are getting hollower and still he will not look at the evidence in from of him and do a biopsy, I am in his little box and his little protocol and that is that as far as he is concerned, he does not want to waste resources on me, because he believes I am dieing, well he is wrong and I have to find a competent doctor before any more blunders or mistakes are made on me, that can't be reversed like the damage to my bowel, I have looked on line and put in everything I can think of but all I get it names and they could be just the same, does anyone know a forum in Australia I could go on that is about oncologists, I need to find someone fast it is so frightening, biut I am coping well and will keep plodding on till I find someone who other paitients recommend as being on there side, he is not on my side, he is just concerned with his protocol and getting me on these tablets and closing the draw on me, I wont be put in a corner, if I can't find anything today I will call my local member of parliament for assistance and tall him my story of blunders and mistakes and with held treatments, if any one can think of anything to help me please write back to me, thank you for your support and help, there is no help page or forum I can find in Australia not even on the cancer council's page it is so wrong, the doctors have it all tied up in a neat bow and only they know how to untie it, well I will just have to be a quick study and learn or ask someone with some power to untie it for me, I am given no option, this is my life I have 2 small children and I wont be brushed aside and refused treatments and tests and that is all, I wish I had better bright news to share, perhaps when I find a doctor to give me a biopsy, I will, pray that is so please.

I am happy to do some research for you online and by phone. It has been interesting finding out about your patients rights under Australia's dhhs. How far do you want to travel?
I am sorry my earlier postings were totally off the mark for you. I hope I can make up for it. You are not alone. I will do my best to help you.

Hi everyone, well I am still here, thank you for all the information it is great, I will check it all out, yes it is a shame, but I will be asking for his qualifications to be treating a patient with such a rare cancer and if he doesn't have the experience or qualifications, that under the Australian constitution I am entitled to have a diagnoses by a doctor who is qualified and has experience I will be asking to see some one who has, apparently my doctor is consulting with a doctor from the Peter Mc in Melbourne and he has not seen me yet, so if I can't find anyone here I will be asking for him name and be going there to him, this is my life and I have to do all in my power to keep it, I will let you know what happens.

I am glad you are feeling better. I am off into the wilderness for a week. I have a satellite phone but don't know if my computer will work with the phone for internet access. If it does work, I will feel kind of silly to be in pristine areas playing on the internet. I actually need my computer for work while I am there but that is what we all say...:) Please keep us updated.

I have some interesting results from my cat-scan - The doctor said " Perhaps your type of cancer is hard to read on cat-scan, but there is nothing solid in the now leftover sack, it appears to be fluid and is looking more like a cyst'', the tumors in my liver are completely gone and in my last cat-scan 3 large tumours were clearly there and now there is nothing there! just this large bag of fluid, He also said "We want you to go for a PET scan to see if any cancer is left over but it looks like the chemo has done it's work" Amazing !!!!!!!!!! my GP also wrote to my doctor asking him to give me a referral for a second opinion and in light of what has happened I think he felt it was time someone saw me who was working with my type of cancer, which now appears to have disappeared !! how nuts is that??? so i will be heading to Melbourne Peter mac to see a sarcoma man, anyway I am glad they are gone and hope and pray they are right and it is just a big cyst now so they can finally look at getting it out, I hope the PET scans come back happy too, how amazing it that??? also I think I have figured out the amount of coloxal and senna to have and when, slept last night for the first time in ages through the night, I was woken at 5 then again at 6 and that was that, I took 2 at night and then 1 the next night, confused the poor bowel, but hey it worked once it can work again. I am just amazed and didn't really know what to say, I think I was in shock, it took about an hour to hit me, I hope they are right... Thank you I will keep you posted.

Subzeromambo thank you have fun!

Well when I look back at my posts to you I seem to have a lot of bad nights, but i asked my doctor when I went in if there was anything in the pelvis or tummy area as he knows about my bowel and he said no, I am just wondering if I should call tomorrow as I had a good night last night after I popped a hot water bottle on my tummy for a little while, and as I had been having explosive diarrhea I thought my bowel might just be inflamed, so I rested well this morning I took one movicol and drank 2 cups of senna tea and had a movement but it was not clearing so I had another about 4 hours later, i went for a walk on the grass and drank a lot of water, I felt fine the pain in the side had gone and the partial obstruction had moved down, I had blended soup for tea and felt fine, I passed a little more and then that stopped for the night, on bed time I felt hungry, I am always hungry, so I warmed up some soup, then I watched a short movie and lay down to go to sleep, now the pain in my left side has returned, the pain was mainly in my belly button area now it is focused on the left of it almost in a straight line, it is painful but not as painful as it was before, so do I go to the hospital? or stick with it and just keep nursing it? can the pain come back after the obstruction is gone? or could there be 2 obstructions? I don't know been telling them and telling them, i seriously don't think I am saying it loudly enough, I am so worried it is something sinister, but I have to have this test and be gone 3 days and I want to know if the cancer has gone, also would an obstruction show up on a CT ? tomorrow I am going to eat soft solid food and if it hurts I am going to the hospital, where I had my ili reversed and the PET -scan is going to have to wait for another time, I know you think I should have gone in the other day, but the hospitals here don't really work weekends so i would of had to wait until Monday anyway, to see the inside of some sort of scan or someone who knew what they were talking about to look at me, so i thought I would give it a go at home, I hate those partial block thinks and i can usually clear them faster than they can at home, but this one is a champion, whatever it is, it is not poo, it can not be, it has withstood senna coloxal and movicol and I still hurts, it is not something I ate, but wouldn't it show up on CT with contrast? please help Maggie