I have had Crohns for over 20 years and some ten years ago had a hemi colectomy, with my iliuem removed.  I have recently been trying to treat my excessive bowel movements by altering my diet.  I have drastically reduced my fat intake and this has helped but my weight has dropped from 8 to 7.5stone.  Has anbody else had a semi colectomy with removal of the iliuem and what foods have you found help and don't help.  Please forgive any errors new to this forum game. Many Thx Noodle age 45.
Ps. Taking Lopermide but with limited success.

Hi Noodle,nice to meet you.







regards David

Hi Noodle. Welcome to the site.

I had the same op a few years ago and I still haven't sorted my diet out either.
I don't eat anything spicy but never really have. No alcohol but gave that up many years ago because that definately didn't agree with the old bowels.
I avoid eggs, bananas, nuts, meats that dont break up easily, gravy and cream. Can't give a definite reason for any of them but they have all caused problems for me in the past.
I think I tend to eat too fast and not chewing food enough so that won't help.
During a flare up anything you eat can cause problems because if you have a blockage nothing will move but by the time the pain starts it too late and you have already eaten lots. The only thing that moves during a flare up is wind, and that bloody hurts.
Funny thing is though, I can eat anything inbetween flare ups and I feel ok.
Bowels can vary even at the same sitting. pun intended but true as well.
Can be anywhere between 1-5 in a day then nothing for 3 days during a flare up followed by a mass evacuation as it eases.
I'm just on prednisolone when I need it. Seems to be getting more often recently (gulp!) .

Keep well.

in feb i was told i had crohns in the iliuem after years of illness it was nice to find out i did have a illness if you know what i mean ? i was put on steriods and antiboties and pentasa i had a really bad side effects from the steriods i was then put on azathioprinebut i seem to have got worse and not better i had a barium meal the other day and they are saying that it show i have a stricture in the ileum, but on thursday i was rushed into hospital because i had really bad pain but all they did was give me pain killers and sent me home i have mouths sores and feel really bad i just wish i could start feeling better when i was first seen the doc did say i might have to have a op to sort it out and i just wonder would it be better to have this done now ? i know everyone feels bad and nobody that doesnt suffer with crohns doesnt know how bad you can get , can anyone tell me anything good about crohns ??????

Oldwitch

I struggle to think of one good thing other than not having to worry about been overweight!!  With regard to surgery, I went against the advice of my medical consultant and had my ileum removed some 10 years ago, it was rough for a few days after the op, but in hindsight it was the best thing I ever did, I have been able to work full time and only ever miss the odd day off and thats rare.  I have found over the past few years that avoiding the usual suspects, keep fat to a bare minimum and a daily intake of lopermide, iron, multivits, and questran have seen me go to two bowel movements a day and they are usually something bordering on solid.
You still get some bowel pain, bone pain and headaches but that could just be because I am 45!!!
Let me know if I can be of any further help.

thank you for your reply the funny thing is i havent lost any weight the doctors dont know why i havent why did the consultant not want you to have your ileum removed? when you say the usual suspects for you what was that? i havent been on any of the tablets you have said i feel that iam not getting any better or am i expecting things to happen straight away ?

Oldwitch, it's difficult to say as I can only comment on my own condition, I kept going into casulaty every 4/5 months with a blockage because of the narrowing in the bowel due to the constant flare ups.  Usually three days on painkillers and a drip and I was released.  Not really sure why my medical consultant wasn't keen on sugery possibly because once you remove it then you can't put it back!!  The surgeon said it was the mankiest piece of bowel he had seen for quite some time.  Also I suffered from back pain and it turned out the bowel had "welded" itself to my spine.

After 20 years the one thing I have learn't is that it is up to you to push your cause, if you sit back and leave it to the medics then you lose control.  Read up on the different surgical options and pros and cons, medications and side effects and don't be afraid to ask for a second opinion.  It's your diesease so its up to you to push your case.  Try not to be too much of a victim.

Best of luck.

thanks noodle iam glad that you feel better i know what you mean take control 2 years ago i had a flair up but didnt know it at the time as was in bed for 6 weeks and all they kept saying was i had a bug , but when you dont really know whats going on you just let them tell you wants best for you but by talking and reading you get to know alot more about crohns thank you very much .

well i had to have my ileum removed after getting taken into hospital 3 weeks ago they thought this way was the best to go i have had about 25cm removed after the op i had a ileus which is when the bowel stops working,so iam back at home now tuimmy abit sore but the worst is the diao is so bad iam hoping that it will sette but at the mo its really bad got to see my coult next week the op went really well so the surgeon said but i just dont know why the bowel is not working now any ideas xx

Hi Oldwitch,

My son had this op 6 weeks ago now, and I am happy to report that things have settled down fairly well. They did say that because they have removed the ileao-caecal junction and then reconnected, it would be a while for the diarrhoea to settle. The first couple of weeks were the worst, but gradually the poo is better. He is still going upto 3 times a day, but this is better than before and much less diarrhoea. Fingers crossed for you that yours will settle soon.

thank you mary k i hope your son is feeling ok is he on any tablets? is he eating ok? i dont know what to think as i havent seen anyone since and was just sent home i dont see my couls untill 4th aug and have been signed offf work for 2months , how long has your son had crohns ? i was told that i should be alot better after the op so i keep my fingers crossed

Hi,

Ben is 10yrs old and has been diagnosed since March 2008. He is currently on Azathioprine and mesalazine as well as hydrocortisone as they are trying to wean him off steroid therapy(prednisolone). He eats a pretty balanced diet, though being 10, we do have the sweets and burgers to contend with. I have come to the conclusion though that life is hard enough without depriving him of the things he enjoys so as the old saying goes, all things in moderation. It is only really in the last week or so that he is starting to feel that maybe it is working for him, although as soon as we start to think that we feel as though things go awry again, we are just hoping that given time, his damaged bowel will heal and he will get some respite and remission from this horrible disease.

We do try to keep optimistic...honest.

Mary.

hi mary
Ben is so young to have this horriable condition it must be so hard for you all i had azathioprine but it didnt work for me i dont understand why its so hard to control it ? The trouble is everyone you speak to suffers from different things , what does the hydrocortisone do? i hope that they can get ben under control so hopefully he will be able to have sweets and burgers

xx

Hi,
When Ben was diagnosed, he had 6 weeks of lisuid milk feed diet. This only partly settled his problem and apart from the odd week here or there he has been on steroids(prednisolone) to try to settle the crohn's by reducing inflammation. This only really worked when he was taking high doses. As the side effects are not good, he had a scope and was signed up for the hemi-colectomy. The fact he has been on steroids for so long means that his own glands which would usually produce steroids in times of illness or stress have stopped working. This means he needs steroid replacement and gradually weaning off them as his body takes over steroid production again. The hydrocortisone is the closest steroid to the bodies natural one, so now he has to take this and hopefully his body will start to produce steroid again soon. So, now we are under 4 different consultants with the outpatients appointments to go with.

I know what you mean about everyone responding differently with this condition. I seem to be reading about new symptoms all the time. I'm thankful at the moment that he doesn't have any joint/skin problems. Touch Wood!

Hope you are feeling a bit better and that given a bit more time things will settle properly for you.

Take care,
Mary

well i went to see my couls for the first time after the op and i hadnt seen him before cause mine had left so he is new well i wish i hadent  gone he was so down saying that just because i have the op its still gonna be bad for me and that i would be on imodium pentsa and azathioprine and that my bowel movements would still be bad why did i have the op i thought it was to make me better i knew that the crohns would still have to be controlled  but though i would be better silly me i just feel so down after seeing him ,my joints are feeling bad as well but he didnt say anything about that and i asked him about b12 but didnt seem to be worried saying i should have a good store of it .