I had my first step of my surgery November 18th 2019. My recovery up has been rocky with lots of ups and downs. Having a lot of nausea and weakness; I started fainting ( and I’ve never fainted before in my life) and troubles with appetite and eating 

from a few days post-op, I’ve had a lot of fluid still coming from rectum. It’s usually a Clear/brown/pink mucousy fluid with your typical “bowel” smell to it.  Depending on the day it’s almost an uncontrollable amount - in the hopdital I literally had to wear diapers and change them constantly because I had no control over it, and at night I have to sleep on towels and puppy pads because I end up having several accidents. I go to the bathroom to “poop” and empty it all out as well as I can several tones a day, and lately I’ve been noticing when wiping, though I have no pain or burning in my rectum or anything other than the odd random bowel cramp, I’ve found the toilet paper has a light bloody discharge on it. It’s not bright or dark red, out it’s varying shades of light and dark pink sometimes. Is all this normal?? I haven’t gone back for any post op scans yet

 

 

Also I ate shepherds pie for the first time and ate creamed corn for the first time in years. Today I woke up with just some pressure and nausea - granted  I   wake up a bit gassy/nauseated every day. I ate a little bit of breakfast and took gas x and a tums. As I sat there the pressure kind of built up and I ended up getting sick.  I waited a while and ate some crackers and then some hot tomato soup to hopefully soothe my stomach And went to the bathroom to empty my bag and ended up spewing all of it back up again  

I took more tums and drank some water and waited again and ate a normal supper (my mom wanted Chinese) Itd an hour or two later, still don’t have any really output, I just have had a little gas and some thin watery stuff, but currently don’t really feel any pressure or nausea or cramping... should I continue to be worried ? Any suggestions on how I could help push everything out?

 

 

 

 

 

 

Original Post

I had my step 1 in Oct last year, I've been struggling much with this type of stuff from the rectum. Started with white mucus, then more and more.. Then inflamed again, blood, mucus, brown stuff, pink stuff and so on.. My surgeon said that it all was normal. But it wasn't this normal to be so inflamed like i am.. Now I'm struggling with severe cramps during the day, this is rallying painful.. The more cramps i get the more blood comes out.. I still have total control over my rectum, but i remember from when I had a lot of mucus with my uc, then it could suddenly just come out by itself.. 

Bent-Arne posted:

I had my step 1 in Oct last year, I've been struggling much with this type of stuff from the rectum. Started with white mucus, then more and more.. Then inflamed again, blood, mucus, brown stuff, pink stuff and so on.. My surgeon said that it all was normal. But it wasn't this normal to be so inflamed like i am.. Now I'm struggling with severe cramps during the day, this is rallying painful.. The more cramps i get the more blood comes out.. I still have total control over my rectum, but i remember from when I had a lot of mucus with my uc, then it could suddenly just come out by itself.. 

Thank god! I have been so concerned. My doctors all brushed it off but I felt like they were not really understanding the amount of amount and consistency so I have been so worried about the bloodiness randomly but that sounds exactly the same as mine I just hav emo real cramping or inflammation that I can feel  !!!

Creamed corn, or corn in any style, will be very hard for you to digest right now. Maybe try again later on. But remember that corn is not soluble. It will not break down in your system and it will come out looking pretty much the same way it went in. Green peppers, celery, raw carrots, mushrooms, these veg don't break down. They are insoluble.  It might get stuck, or be painful to push out, or want out in a rush. Same with Chinese food which can be mostly quick cooked, still crunchy vegetables. The blood might be because your insides are irritated or it's an abrasion from surgery, or old blood making its way out. Your guts are constantly producing mucus and it needs to come out. You are brave to eat corn and shepherds pie so soon after your surgery. Even after my step two takedown, I thought I was safe and I ate buckwheat salad. Can you believe?  Buckwheat!  And salad! I almost didn't make it home, and was doubled over in pain. I haven't gone near buckwheat since. Pasta, rice, scrambled eggs, tofu, long-cooking oatmeal, bananas, fish, bread, steamed spinach, peeled cooked zucchini are your friends for now. Chew everything well. No raw foods. Go easy on your system while it's so new and still healing. Later on you can have your favourite foods! I remember my surgeon told me that it was normal to have some output while I still had the ostomy. If you are bleeding heavily, develop a fever, vomiting, pain, and no output from your bag, see your doctor. 

Winterberry posted:

Creamed corn, or corn in any style, will be very hard for you to digest right now. Maybe try again later on. But remember that corn is not soluble. It will not break down in your system and it will come out looking pretty much the same way it went in. Green peppers, celery, raw carrots, mushrooms, these veg don't break down. They are insoluble.  It might get stuck, or be painful to push out, or want out in a rush. Same with Chinese food which can be mostly quick cooked, still crunchy vegetables. The blood might be because your insides are irritated or it's an abrasion from surgery, or old blood making its way out. Your guts are constantly producing mucus and it needs to come out. You are brave to eat corn and shepherds pie so soon after your surgery. Even after my step two takedown, I thought I was safe and I ate buckwheat salad. Can you believe?  Buckwheat!  And salad! I almost didn't make it home, and was doubled over in pain. I haven't gone near buckwheat since. Pasta, rice, scrambled eggs, tofu, long-cooking oatmeal, bananas, fish, bread, steamed spinach, peeled cooked zucchini are your friends for now. Chew everything well. No raw foods. Go easy on your system while it's so new and still healing. Later on you can have your favourite foods! I remember my surgeon told me that it was normal to have some output while I still had the ostomy. If you are bleeding heavily, develop a fever, vomiting, pain, and no output from your bag, see your doctor. 

I I am very careful to chew well, and I can tolerate vegetables really well bad have even ate salads and everything with absolutely no troubles. I’m a bit more adventurous then most people because my whole family has FAP so its more common to all have ileostomy bags  but o know I do eat a lot of riskier foods. My aunt has an ileostomy and served me the shepahrds pie so I guess i assumes it would be okay too but I think that’s my 100% no no list is now  

the Chinese food I ate was well chewed and I always microwave it more so it softens a everything, And me and my mom both picked through and only chose the soft items and removed the harder ones 

I have some gas and runny liquids passing right now,and honestly I I just feel a little “backed up” - but currently not nauseated or really bloated, my belly isn’t particularly hard and I’m not throwing up excessively.  Been laying on my side with a heating pad and drinking fluids today too   

FAPqueen posted:
Bent-Arne posted:

I had my step 1 in Oct last year, I've been struggling much with this type of stuff from the rectum. Started with white mucus, then more and more.. Then inflamed again, blood, mucus, brown stuff, pink stuff and so on.. My surgeon said that it all was normal. But it wasn't this normal to be so inflamed like i am.. Now I'm struggling with severe cramps during the day, this is rallying painful.. The more cramps i get the more blood comes out.. I still have total control over my rectum, but i remember from when I had a lot of mucus with my uc, then it could suddenly just come out by itself.. 

Thank god! I have been so concerned. My doctors all brushed it off but I felt like they were not really understanding the amount of amount and consistency so I have been so worried about the bloodiness randomly but that sounds exactly the same as mine I just hav emo real cramping or inflammation that I can feel  !!!

Me too have been conserned about this my biggest consern was that I couldn't have a j pouch created when my rectum was so inflamed again. But after a talk with the surgeon i was happy again, they just said they cut out the part that's inflamed. But now I'm in really big trouble.. Have so much pain and cramping and bleeding, i don't respond to any medication at all. So next week I'm trying some anti tnf treatment, probably infliximab. So hopefully this will calm a bit down before surgery in one month. I'm stuffed with painkillers at the moment.. And they barely touch this strange pain.. 

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