My son was diverted back to loop ileostomy 1 week ago. He still seems extremely tired to me. He sleeps 18 hrs a day and still tired. Not sure if this is normal at this point. He is keeping hydrated.
Also he can eat only small amounts at a time and gets full and uncomfortable very easily. When does this start to improve?
Finally, does the mucus discharge from the bottom get less over time?
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Unfortunately my j-pouch didn't get better when I was diverted to a permanent ileostomy so 6 months later I had it removed. Please make sure he stays well hydrated. I do have more issues with hydration than I did with my j-pouch but it is not difficult to manage.
Thanks Te Marie. What issues was your j-pouch causing that led you to the decision to have it removed? I've read some of your previous posts an you've certainly had a rough ride. Hopefully all is well now.
Were you able to eat somewhat normal meals when diverted? Did you get full/uncomfortable every time you ate? Are you able to eat normally now?
How long did it take to get some energy back after diversion surgery? Or did it not come back until the pouch was removed?
My son has no pain right now, just weak/tired and not able to eat much. We don't know the long term plan yet. First he has to regain some weight/strength (he is 5'10" and 105lbs). Then he will have some further tests done to see if they can do an advancement to salvage the pouch. All of his issues are down low with some pouchitis and anastamosis issues. He is only 18 and I think he wants to try to salvage it if Drs say it's doable. He can also choose to leave it in and stay diverted as long as it is not causing problems. The only problems he is having right now is very low energy and not able to eat too much because of uncomfortable fullness. Drs say it's normal, just wondering what other's experiences are at this point.
I'm sorry he is having such a rough time. He sounds underweight so I understand your concern with getting him to eat. Something that I started doing with my j-pouch and still do today is make protein smoothies with lots of fruit and vegetables. It works well as it helps with our fast transit times. I use a protein powder that is all plant based and hypoallergenic. I always have a banana, which helps with hydration, blueberries and carrots. I add another fruit and usually kale in there too. It isn't low calorie. I'm sure they have told you about ensure like products. I never found one that tasted good. My nutritionist suggested the protein shakes. For a while there before my diversion surgery I had 2 shakes a day.
If you add an English muffin with peanut butter it is a good meal that is bag friendly.
I eat more than I could with my j-pouch. I don't eat very many salads because they tend to race through my system without digesting, sorry if tmi.
She took care of my adhesions during surgery so I didn't have a problem of feeling too full when I ate. She spent a lot of time during the removal surgery lysing my adhesions too. I wonder if your son is battling internal scarring too.
I had chronic pouchitis and cuffitis plus the cuffitis was causing continuing scarring at the base of my j-pouch that dilation didn't help. I had dilation during pouch scopes and had a surgical one done that was back immediately. I had to give myself enemas in order to empty my j-pouch. The pouchitis et al didn't go away after I was diverted so I had my j-pouch out.
We all have different problems. I hope the diversion helps clear up your son's problems. I can understand why he wants to see if a revision will work. I wish they would have given him a permanent ileostomy instead of a temp one as the permanent ones are much better to deal with.
He is thin so I hope he isn't having problems with the bag.
Hi Momma. Good to hear the surgery went ok. It is going to take a while for him to get his strength back. Have patience, is he still in the hospital? Also, the pouch expert is Dr Remzi. He used to be at the Cleveland Clinic but two years ago moved to NYU. Several people on this forum have used him. From what I understand, if anything can be saved, he can do it. Has anyone suggested any supplements? No one did to my son either, but I firmly believe they help. I had gastric bypass surgery 17 months ago, now I do understand it involves the small intestine and not the large, but I have to take a ton of vitamin. Calcium, for one as well as maganisium,. Also I have to eat/drink 60-80mg of protein daily. Keeps thenhair from falling out. Also iron and a bunch of other stuff. It can only help. In my opinion, he needs the calcium for his bones and brain development, the protein for his skin, and hair. Jeffrey has lost most of his hair. He doesn’t eat right at all. But give you son some time. He is also most likely depressed. That makes you exhausted too. He has a lot going on. It’s going to take time. Dianne
We got home from the hospital on Saturday. He’s out of pain and sleeping through the night (and day lol) and not living in the bathroom. So much better than last week, so thankful for that. I suppose this is all normal recuperation I just tend to over worry about everything. Drs never checked him for vitamin deficiency and I read some people need b shots and iron shots. I bought him some chewables. If we don’t see an improvement by next week I will escalate to the Drs again. I do think we will visit Remzi at some point when he is a bit stronger.
Wow that was quick. Jeffrey is usually in for about two weeks. Aand complaining about pain for months. Im sure you both are happy to be in your own beds!
Yes always good to be home. He is a bit better today... a bit more energy and eating more. Hopeful he is on the mend.
