Thanks to all
Thanks to all
I'm sorry that you guys are dealing with rough times, but it does get better. I have an ileostomy and I can eat almost anything except for raw food and some other things... Ensure is a great way to help keep weight steady and maybe help add a few pounds here and there, but he should be able to eat other things. Like Ron in Mich stated, he had pasta with meat sauce, etc. I do, too. My noodles have to be completely cooked... not to the point of mushy necessarily, but definitely not al dente'. I have to keep hydrated too while eating and throughout the day... definitely helps making sure that things are moving like they should. Smoothies are good and can be made in any way. Applesauce is a best friend for sure for us. Other things, too... kind of have to play around with it a bit to get a feel for how his body will respond.
Please let us know how it's going and any other questions, feel free to ask or talk to his Ostomy Nurse if he has one. It's not the end of the world and we're definitely here to help and support you both. (hugs)
Take care and God Bless!
I understand that this will take a while but I'm also wondering how much of what each of you went thru did you have to do on your own. I change the dressing on all four bags and flush the tubes on the nephrostomies when they need it. He has very high output from his ileostomy so we use a urostomy bag and attach it to an overnight bag so I empty and clean that about 4 times a day. He also had an abscess from a necrotic tumor with bladder cancer (he had a radical cystectomy in February) so he has an open wound in his abdomen that is healing but I change the dressing on that as well. He gets a Lovenox shot every day for the next few months because they found a clot in his leg during surgery so I give him that. He's also getting 1000cc of hydration twice a day and 1600cc of TPN every day. I flush those tubes before and after each infusion and connect/disconnect him from everything throughout the day. I have it scheduled so he has several hours during the day when the only thing he's connected to is the overnight bag for the ileostomy. During the day he empties his urostomy and nephrostomy bags but I do it at night.
We have no small children but I do have a full time job working from home about 14 hours/day. All I want him to do is eat slowly, chew, chew, chew, drink, drink, drink and move around a bit. However, he goes from the bed to the chair to another chair and back to bed with the occasional trips to the bathroom to empty his bags. Did each of you go thru this and was there someone there to help you? I've always been the positive one and I'm in it for the long haul but it's frustrating trying to find ways to motivate him. I want him to wake up excited for a new, beautiful day and be thankful for it. This is his favorite time of the year and we're missing it all. I can't even get him motivated enough to go sit out on the deck for a little while. I did mention that I might need to work with a counselor or join a support group at some point just so I could understand everything a little better but I got a snicker out of that so I'm putting it on the back burner. Hence, my long diatribe here - hopefully none of you will send me a bill
Thank you all for listening and I look forward to any suggestions you might have to help us get thru this.
How did they fix your intestines? My husband was in the hospital for two weeks at the beginning of August with a distended abdomen and they found that his small intestine had swollen to three inches. Sounds horrible but he has a very high pain tolerance so because of that whenever something is wrong it's always a bigger issue than it could have been. He came home for two weeks and was back in for another two weeks with the same problem and that's when he got the ileostomy. I love passing on encouraging words to him in the hopes that something will sink in and motivate him so I really appreciate the help each of you have been giving me
With all the surgeries I've had in the past and the screw-ups I encountered I only wish he had done those operations, he certainly couldn't have done worse. Someday I'll get a copy of that operation he did and be able to give a better answer, Take care, Ed
And in response to your comment about me deserving a medal for doing so much for my husband, none of this is his fault and I couldn't imagine myself not doing everything I could to help him thru this. On the other hand, if he were to cheat on me I wouldn't even wait for the ink to dry on the divorce papers and I'd be gone in a shot
I can tell you that chair to bathroom to chair is pretty average for activity after this kind of surgery. I'm relatively young - I was 35 when it happened - and I was wiped for a couple months. I had help daily in the beginning, because I have 3 children and I could not care for them. I couldn't clean the house or wash their clothes or cook their meals. After 3 or 4 weeks, I could do light housekeeping and make grilled cheese and soup, and it got better from there. After being home for a month was when I first left the house to go pick up a few groceries and after only a half hour of driving that wheelchair cart around I was so fatigued I couldn't do anything the next day.
I went back to work 8 weeks after my surgery. I was pretty weak and still really thin then, but I have a sit-down job so it worked out, lol. I recovered over the winter and this summer I went to the beach and swimming with the kids almost every weekend, took my kayak out (by myself!) and went wilderness camping
Thanks much and prayers,
PS: warning, I just read you should NOT crush the enteric coated asprin
Last edited by gutenberg on Tue Sep 24, 2013 7:15 pm; edited 1 time in total
They told me originally to start and the liquid stage... that was in the hospital... and then I went to soft foods by the time I got to go home. Because of all the surgeries that I've had, I am only working with some small intestine and my ileostomy, so I'm supposed to be really careful all the time. I've gotten used to drinking a lot of water, especially when I eat. I love salads, but have to drink a lot of water with those, too...etc etc. Same with spaghetti... etc. It's really going to depend on him and his body..mainly his body which WILL let him know if he's overdone it. As far as eating slow... lol... that took practice. I've gotten to where I will sing something like Old MacDonald or count to 20, etc in order to know that I've chewed my food like I should.
Now, there are times where I will eat too fast still. I'll admit it. We all do it. I usually lay down after something like that so things can move better.. Again it depends. I try hard to not do that these days...especially since I fought my way through a blockage here at home instead of going back to the hospital because I can't stand the NG tube....again. (sighs)
At any rate.. it will depend on how his body can tolerate things. Take it slow. There is no rush, no hurry, nada. If he ever wants to talk, let us know. We're always here... Sorry for the delay in response btw... I didn't get the notice this time. Go figure lol.
Good luck!! xx Oh and very nice to meet you, Anna! 3
Let's hit this from another angle. The human body has a homeostasis( where it likes to stay ). When it gets use to losing/gaining....it thrives off it. Take for example a healthy, yet over weight women. She exercises, but is discontent. So then she crash diets....when she eats normal again, her body gains weight. Then you hear her say," I just gain the weight back."..or..." I can't lose weight ." Well see in that example, her homeostasis is use to being her weight, so her body wants to be that weight. Follow? So when I use to train ppl I pay attention to homeostasis and metabolism. So really if the body is swinging around, the homeostasis is raffled. So it's great to start maintaining, then gaining. So the body has a platform to build from.
Anxiety/depression? What is really going on....well adrenaline is the hormone that speeds up heart rate by definition, clinically. So when someone has anxiety( smaller ppl usually lose weight, while heavier bigger bone tend to gain ) their heart rate speeds up. Well, so does their breathing, maybe oxygen slightly deprives from brain causing " dizziness." Lets take this up a notch. Well, if the heart is faster and breathing....well so will the G.I system as duz was referring to. Actually it can speed up 3-5x faster. See why anxiety and these type of surgeries don't get along? So, by lowering any anxiety( don't focus on it, or it may cause more ) can help with absorbing as well? Also, anti-depression pills, yes as duz referred to can have a weight gain like effect. I took some off label for zzzz while bulking for weight lifting. I went to the docs a few months later and he couldn't recognize me. He kept looking for me, and I was not far lol. I packed on muscle and weight. All through the practices I believe. Recovery, diet, and micro tearing and stimulating the CNS( central nervous system ) but not overloading the CNS.- Many lifters over stimulate the nervous system by lifting to long or to much work load. I don't expect him to be lifting, so I will stay away from that.
Now pure diet: Understanding.....Take the opposite of the heavy girl with homeostasis I gave earlier. Turn it around, a guy who is trying to gain weight, but having trouble. You need to add 500 calories a day, so 3500 a week 500x7=3,500 to gain 1lb a week by traditional dieting guidelines. However, higher the absorbing rate, slow the metabolism with reduced anxiety or correct depression and it can be less. However, they add in what's called injury factor. So another 200-300 calories. Now this is just for your pure understanding( this is a healthy person ). However, lets up it a notch. So you want the person to maintain, then gain. However,the body might not feel hungry or be able to eat because of the new found raffled homeostasis and the stomach not use to eating as much, and yes anxiety can play a factor. So slow and steady. Like I said a simple adding olive oil to fish can increase 100 calories and get some extra fat in. Adding yogurt to a small lunch can add 100 calories and small protein. I can give you a mock diet and you can take it for what you want, no caffiene. No milk, no pork, no ham. Again a moq:
Toast two slices- yes with the burnt part( it can help with enzymes ).
Anything else tolerated( fruit ), oatmeal, etc
Sandwhich, all natural peanut butter and jelly or turkey( close to the bone )..closer to the bone less preservatves.
All natural potato chips
One cup yogurt
1/2 Banana- cutting off those ends lol.
Something snackish, little debbie
String Cheese(all natural, organic )
2fish fillets, with garlic and olive oil( eliminate garlic if it's not tolerated )
2.5 servings of rice, all natural
Snack 4: Ensure
Snack 5: Pretzels, etc, etc- stay within 200-500 calories, don't overload at night.
Protein sources I like.
- Whey protein acts quick in the body, but also shoots out the body. Egg white protein powder, is more slowly digesting, it's probably all natural....I like Egg white protein!!!!!! Maybe see if adding half the serving size of egg white powder, stir it in an ensure, vanilla is probably better b/c of the egg white flavor. Now you got yourself a High octane drink. Filled with vitamins and amino acids.
Last thoughts: What I wrote is from an opinion I could be off via the conditions.Also, you can scale down anything like instead of two fillets fish 1. Instead of fish, chicken? Etc. The diet was a mock diet to help gain. Also, I'd say liquid multi vitamin over pill, for absorbing- ask the doc( or show him this ). Also, a the egg white protein might help so you can reduce ensures and get a better drink by mixing it wit an ensure. I hope this helps or anyone else. You can always feel free to keep in contact on fb...name is Rick Bitty...if you have anymore questions if you find this helps. Feel free to contact me here to. Gl you seem like a good person standing next to him through everything. Oh I forgot...G2 seemed to sit well with me. Also propel. However, flavors like strawberry, peach...didn't. Also I see some have the same problems with those fruits strawberry and peach. Also, for blockage problems, maybe some fiber. I hope this helps.