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63 lbs and starting over.

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Crohn's Disease
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Posted 2/24/2018 1:48 AM (GMT 0)
I'm back. I was in the hospital for most of January into Feb. Was put on fluids and TPN. I had my reversal surgery on Jan 16th which went okay, well sort of. there was a already a lot of scar tissue in the year's time around the stoma. I had a few complications with my heart and lungs (respiration) seemed everything went south all at once. I felt like I was finished a couple of times. Doctor felt this cross wiring was caused by my electrolytes re balancing themselves after many months of dehydration. I was given a blood transfusion. Finally got through the worst stage but then they found a blood clot in my lung which is presently being treated. I left the hospital at 69 lbs and went down to 63 but now I am at 67, so that is a positive plus forward. I know they say reversals can be a challenge until the bowel re adjusts to it's new normal and that it is. . My concern is the related gassy diarrhea. I'm watching that I don't dehydrate again. Can't take Imodium . The Tylenol 3's have been helpful to keep it somewhat under control. Don't know how long the Dr. will allow me to stay on them to lessen the diarrhea. Any suggestions for diarrhea control? Questran for bile acid induced diarrhea) it use to help, but don't know if they allow it so soon after surgery? Will have to ask the surgeon?

Anyway, I am looking forward to a quick recovery and about 25-30 lbs. It's been a hard year, glad it/s all behind me. The crohn's is currently in remission and hope it stays that way. Hope the scar tissue and stricturing also keeps it's distance. I keep telling myself it's going to get better, it has to get better.
Posted 2/24/2018 6:12 AM (GMT 0)

dorri said...
Any suggestions for diarrhea control?

*S. Boulardii

*Calcium supplements

*Eating rice every day.
Posted 2/24/2018 7:59 AM (GMT 0)
Wow Dorri,

That's a brutal journey you have been on...
Electrolyte rebalancing/TPN can wreak havoc. But you have survived!

The main thing is to give yourself time... and lots of love. You can recover well given plenty of tlc.

Take it really easy, and don't push yourself. Listen to what your body wants - rest, food, whatever.

Be gentle.. things will settle.
Wish you good luck.
Posted 2/24/2018 8:03 AM (GMT 0)
Hi Dorri

Sorry to hear you had such a bad time but glad you seem to be on the mend now.

I have no experience re readjustment to bile acids but for diarrhoea, plain white rice twice a day helped me a lot when I went back to some solids after two months of EEN. I also used to take Optifibre (special soluble fibre, nothing like psyllium) twice a day.

Fingers crossed it calms down quickly for you.
Posted 2/25/2018 1:47 AM (GMT 0)
Dorri,

What a journey you've had. You must have tremendous fortitude. I wish you all the success in the world in getting through all of this and back to feeling good. Hope you'll get the weight gain you need as soon as possible. Keep us posted on your progress.
Posted 2/25/2018 5:12 AM (GMT 0)
Thank you all, you are all most kind. Yes, I'm looking forward to a break and hopefully a permanent one with a few added pounds.
Posted 3/8/2018 7:43 PM (GMT 0)
Little update. I went in for my follow up. My doctor's weigh scale shows I have gained a pound. I was hoping for more but It's better than nothing, The calories were there, but I have had bad diarrhea setting me back since my surgery. Yesterday the doctor prescribed Lomotil. Still haven't started it, but I want to get past this weight loss and gain pounds. Hope it will work for me and others who may have the same problem.
Posted 3/8/2018 8:58 PM (GMT 0)
Wow, but a pound gained is better than a pound lost! You can do it!
Posted 3/9/2018 12:21 AM (GMT 0)
wait, you weigh 63 pounds?
Posted 3/9/2018 1:25 AM (GMT 0)
Yes, when I came home from the hospital, I dropped to 63.5. Then I went up to 67, and my follow up yesterday, showed that I am now 68 lbs!

Thank you scifigal2k for the encouragement. I know it's hard for some to believe that I am that thin, that is until they see me. That's why I was put on TPN. Putting on weight is a real challenge.

I finally found a Boost that I can tolerate. It's a clear Boost, not a milky one. I can't handle the milky ones at all. The Wild Berry tastes awesome. It's only 189 calories in comparsion to the 350 calories the Boost Plus provided, but there was no point drinking it because it just made me nauseous and run more. Still the clear Formula provides 8.8 grams of protein and it doesn't make me nauseous, so I am so happy about that.

Post Edited (dorri) : 3/8/2018 6:49:21 PM (GMT-7)

Posted 3/9/2018 1:58 AM (GMT 0)
Hey Dorri, sorry to hear about your troubles. Do you mind if I ask, how tall are you? m/f? I used to have a friend w/ your name.

When I was VERY sick, I weighed 60 pounds less than what I'm supposed to weigh, so I know what its like to be underweight but what you're describing sounds worse.

I'm happy to hear that slowly but surely you're putting weight on, just keep it up! Don't think you're alone, because you're not. Just get better everyday; we know you can do it smile
Posted 3/9/2018 4:01 AM (GMT 0)
No, not worse. I'm sure losing your 60 lbs really showed on your frame as well and you probably were sick and weak as well? How are you feeling now? Did you ever put the weight back on? For me being 5 feet tall and losing close to 30 lbs in a years time from surgery, high out put ileostomy and dehydration really showed on my small frame. The hospital pointed out where all my fat stores had disappeared and I had muscle wasting which is a sure sign of trouble because when the body uses up the fat stores, it goes after muscles next. I should point out, that I had yo yo weight loss and gain over the last several years, so maybe the weight I lost over the course of the year was not all stable weight to begin with, in other words I would lose some of it on and off when I got sick.

Thank you for the encouraging word as well, hope you get better as well.
Posted 3/10/2018 4:54 AM (GMT 0)
I'm back to my normal weight and meds are really helping, but certain foods I can't eat (salad), I REALLY miss.

I'm 6'2 and big boned, so when I was very sick, my mom said I looked like a Holocaust survivor (its okay we're Jewish)
Posted 3/10/2018 6:17 AM (GMT 0)
Billo, so great to hear that you're back to your normal weight. You came a long way. That was a lot of pounds to regain? Yah, I know of the emaciated look you speak of, I look the same way, but it will be great to see changes as the pounds come on.

Is it the lettuce in salads you can't handle, I can't either, with the crohn's I never really could, but the iceberg lettuce is a little more forgiving if you cheat. If you can, maybe you can eat cucumbers and tomatoes and pour salad dressing over it, then close your eyes and pretend your eating a salad That's what I do. It won't work if you can't eat seeds and skins. When I had the ileostomy, I deseeded and deskinned everything, but then there was hardly anything left to eat..LoL.

You are so encouraging, if you can do it, so will I. Thank you.
Posted 3/10/2018 3:37 PM (GMT 0)
Its weird about the salad. I did a Google search and found that lettuce causes gas/bloating in normal people. When I experienced pain, I forced myself to burp and the pain started to subside. Then again I have narrowing so its possible the pain I experience is because of my Crohns.
Posted 3/11/2018 5:34 AM (GMT 0)
Yes, that's true, lettuce can cause gas and bloat and belching. I never knew this before and was surprised when I found out. With crohn's, sometimes it's hard to connect any one food with flares?
I also never knew that lettuce is high in fiber and can irritate the bowel. Maybe that is why it never got digested when I ate it?

I've been doing searches for the most digestible lettuce that won't cause these symptoms. Not much out there, except baby lettuce leaves are mentioned.
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