Total colectomy , stoma adhesions, more surgery

Hi I had a temp loop ileo for fours years and ended up with a peristomal hernia and a stoma prolapse .

Had a total colectomy in August this year and then on the 18 th of September after many problems had to have surgery again , my stoma wasn't working properly and when operated on they found 3 chronic bowel loops and a stoma adhesion :) I'm still not feeling great and have only been out if the house once in months ( except for hospital )

I seem to .have so much painful gas and was wondering is this Normal with a end ileo ?

The skin around my stoma has turned a light purple color although not sore any ideas if I should worry about this ?

Iseemto have normal output although it can take a long time to appear .

Al's have a lot of pressure at times that I
Think is gas , thank you for any help

Thank you rosemary
I have been following your story for a long time and I must say you have really had a difficult time with stenosis and surgerys , my heart really feels for you .how are you doing now ?

I seem to get good output then nothing with a lot of nausea then liquid output I'm also taking high protein drinks and haven't eaten solids for a few days as I was only seeing food I'd eaten two days ago appear last night .

Do you get a lot of gas rosemary ?

I have lost a lot of weight since going in to hospital in August and feel really tired , no energy I'm down to 42 kg from 54 !

I just want to get well my daughter gets married three weeks Saturday. And I've looked forward to this for a long time , drs said back in August oh you got plenty time to recover
Well they didn't warn me about adhesions and bowel loops !
I would never have gone ahead if they had
Thanks again for the advice rosemary and I hope you are feeling a little better , how is the output now ?
Best wishes for you lucky

Would love to have some of the nice warm weather here rosemary it's cool here today so indoors is the place to be !

Glad you were able to eat solids and pass them easily , just make sure you drink enough you don't want to dehydrate in the hot weather rosemary

No as I was in hospital dr did a ct scan with contrast and just a normal abdo X-ray it was my gastro dr who contacted surgeon and said I needed a revision it was suppose to be a lapro surgery but he ended opening up the previous surgical scar( pelic to just under my breast bone ) , not much fun 2 in space of barely 3 weeks I'm hoping I just have swelling and inflammation today I have output but. I did only have proton drinks. I see my. Gastro dr later this week but should it get any wors e I will all him before

Glad you are enjoying the sightseeing sounds fun
All the best lucky

I get how you are full so quick rosemary , I am exactly the same i seem to be able to eat small amounts at a time but after lunch I am so full I struggle to eat anything for dinner and am so full after my stomach is bloated and last night I actually was sick , drinking was impossible .

The dietician said to eat 6 small meals a day but even that's to much , I was hoping to put on some weight before my daughters wedding but somehow can't see that happening

How much weight have you lost rosemary ?

Rosemary my gastrO told me last year that I have slow motility of the small intestines but I didn't quite believe him as I always had pretty good output with my temp ileo plus he only made the diagnosis by knowing my history no tests .

Maybe he is right but after the first surgery my symptons do feel almost the same just don't get why I have so much qpainful gas

I eat very similar foods to you rosemary cant see the point of forcing food in when it only ends up in the toilet bowl ( lol ) maybe our stomachs have shrunk after being starved for so long ? Surely has to get better !
I don't blame you for staying would be awful to go home and try to get help should anything go wrong, I guess that's negative thinking but after what we have been through who could blame us , especially you rosemary I have followed your posts for a few years and you sure have been through the wringer .
We are going to improve but maybe it's just taking a little longer because of all the ups and downs and you must have another boat trip to enjoy soon and I have a wedding to go to
Fingers and toes crossed for us both

Hi lucky lass,

The successor of the doc in Massachusetts who saved my life with the first ileo that then stenosed after 4 years (but hey I got 4 good years) told me that I had slow small bowel motility but I know I do not as I have a motility test with speeds of the different zones. The successor told me thgis when he left me stuck witha seriously closed stoma.

Stuff was whaling thru me the month the NYC stoma worked. This one is all open and scietifically made very well. I think it is our adhesions that are slowing our motility and no doc likes to talk about that. BUT all these stoma docs are just doing thgeir best to try and save my life, so what can I say.

I know, the worst would be an sbo, but this early satiety is a bummer too. What really speeds me up is a chcocolate soft serve and a grape juice, feels good when all this waste is outta me! I so hear you!

Rosemary

Only 1 glaSs of grape juice. Where do you buy liquid chlorophyll? I don't seem to have any gas pains, but I do have at least some muscle pain (or maybe adhesion in muscle layer) when I lie on my left side. So I have to sleep on my right or my back.

Hi lucky

Thanks for info. Today I did caffeine cofee. OJ, yogurt, then a sugary liquid yogurt

Then for lunch tomatoe soup, egg, and a few crackers.

The liquid that was in me sure whaled on through! For sure!

So as I now a bit dehydrated. I gotta drink some plain water now I think.

Temps in the 60's and nice. Gotta figure out the public bus system here much cheaper than cabs or limos. If I was all together I would not hesitate. But post surgery and with all this input output stuff to figure out makes it hard!

Rosemary

Rosemary
I have been having sustagen , that's kinda like a replacement energy drink it has all the vitamins and minerals our body needs , I mix it with water and try to have at least 2 to 3 cups a day along with yoghurt toast ,soups, and I seem to have a craving for tin cheesy spaghetti trouble is come dinner time I'm full after about 3 mouthfuls .

Tonight I had crumbed chicken potatoes and veg but only ate half a potatoe and one teaspoon of veg and a half chicken strip.
My output is still really slow and I'm only emptying 4 to 5. Times in twenty four hours ? Not sure if this is normal or not ?
Lucky

I am in Melbourne Australia rosemary , when I had the colectomy my surgeon used mesh to repair the peristomal hernia and revise the stoma I wouldn't recommend him to anyone he was very arrogant and wouldn't listen to me or my gastroenterologist that something wasn't right and my stoma wasn't functioning properly I had a lot of pain and it was obvious my hernia was back , had he repaired it right away I may not have been so sick and had a quicker recovery ! I haven't been back for a checkup as I so annoyed with him .

You mustn't be eating much at all rosemary I thought my food intake was bad but sounds like you are mainly eating liquid supplements .

Have you tried many solids yet ? What about toast ? I find I get really hungry till afternoon but dinner I never feel like I only cook because of my husband but I try to eat little bit of dinner figure it's better than nothing .
The dietician at the hospital told me to eat small meals at least six times a day and to make sure it was high protein as I have to put weight on. But six is just to hard when you are full so quick , I was told to get aloe Vera juice as it soothes the intestines and has many health benefits plus it's full of vitamins it doesn't taste great but jeez it helped with the pain rosemary .

Lucky

No as I was still in hospital didn't have any choice rosemary it had to be him , was way to sick to discharge myself and wait to see another surgeon

Don't know it's not on the operation report probably not and I only seen him once after op and he was annoyed an in a hurry. I asked what's to say it won't happen again he said he'd be really p....dif it it did but ( like I'd be happy about it ) never mentioned using any spray .

I am feeling better than first time but having lot of pain and gas and output is strange not like. My loop illeo but hoping as time. Goes on things will improve .

How are you doing do you feel as though you are improving rosemary ?

Sorry was. Trying to abbrieviate pissed off is what he said ! And like. I would be happy about it .

How you feeling today rosemary ?
Inducing diarrhea shouldn't be the way stomas are suppose to work ,do you get dehydrated when you do this ?
I'm having trouble as well had a toasted cheese sandwich for lunch. And last night a lot of pain vomiting and when it finally come out my stoma it was like concrete , so thick could barely squeeze out of bag
I don't know what is wrong but it's not normal for sure
Wishing you and me well lucky