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Struggling with recovery/weight/output and my mom is freaking out

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cupcakespinkgal
Veteran Member
Joined : Jun 2010
Posts : 1566
Posted 3/16/2016 10:16 AM (GMT -7)
Day 3 at home not so good. I woke up tired and my weight has dropped since being home and my mom is freaking out. Already wants me to call the Dr. I told her even though it feels like forever today is only my 3rd day at home and we need to give it more time.

I'm only 95 pounds right now and even my walks have become a challenge which is upsetting her.

Did other people initially have a weight drop? What were your best foods for thickening output and gaining weight. I can only eat so much right now so I need more calorie dense I think.
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ks1905
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Joined : Sep 2005
Posts : 5857
Posted 3/16/2016 10:25 AM (GMT -7)
Yes, I had the weight loss, fast output, weak and troubles walking. It took some time for me to regain my strength but as my intestine healed my output became slower and I started to put weight back on.

My mother was freaking out too but I did get better. I think a visiting nurse would put your mother at ease, this way she would know that a health care provider is checking on you every day.

Are you scheduled to see your surgeon in the week or so?

I would lose 1 lb a day the first week that I was out, the nurse kept insisting that I drink high-protein Ensure to help with the healing and maybe gain some weight. I had no appetite for over a month.
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Pluot
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Joined : May 2012
Posts : 2500
Posted 3/16/2016 11:32 AM (GMT -7)
Yes, my weight dropped a lot. I was definitely unsteady on my feet for a few weeks after surgery.

Tell your mom she's there to support you right now and you don't have the physical or emotional energy to support her. If she's worried about you she should call the doctor or talk to another friend or family member.

Yogurt, cream of rice, cream of wheat, any kind of white bread, pasta, banana... maybe even french fries... were all good early thickeners for me. If your output is really high/fast you can ask your surgeon about adding a bowel slower like Imodium.

I wouldn't expect to put on a lot of weight immediately, though you should be able to stop losing weight. I didn't gain any weight until a few months after my ostomy closure because my appetite was so slow to come back. I always felt full and just didn't desire food. After a while a switch flipped and I gained back all the weight I lost pretty rapidly.
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ByeByeUC
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Joined : Feb 2011
Posts : 4579
Posted 3/16/2016 11:58 AM (GMT -7)
I lost a ton of weight and lacked energy for about a good month after my first surgery. I couldn't gain weight with my ileo while I had it for four months. But it was a loop ileo. I didn't start to gain back my weight until about six months after my reversal surgery. It will come back with time.
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cupcakespinkgal
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Joined : Jun 2010
Posts : 1566
Posted 3/16/2016 12:46 PM (GMT -7)
Thank you for the replies. Makes me realize what I am experiencing is not unusual. I guess it just caught me off guard because with my loop for my resection I recovered so quick and I gained 12 pounds in 5 weeks after surgery. But my surgeon reminded me i was very sick this time. There was a lot of inflammation and a bigger surgery.

My mom has calmed down. She said I have just felt so bad for so long she just wants to see me well. But that we both need to be more patient. Oh being a patient patient is hard!!!!!
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blueglass
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Joined : Dec 2010
Posts : 3332
Posted 3/16/2016 6:13 PM (GMT -7)
I think my surgeon said I needed 1000 calories a day for healing at first ... And of course you can't really eat that much extra hence the weight loss. You do need a lot of extra protein for healing so if you can drink some protein shakes that can help. Hang in.
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notsosicklygirl
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Joined : Dec 2008
Posts : 17750
Posted 3/18/2016 5:30 PM (GMT -7)
How are you doing cupcakes? I hope you're starting to get your strength back. You will get your appetite back too once you're feeling a little better.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 3/18/2016 6:10 PM (GMT -7)

blueglass said...
I think my surgeon said I needed 1000 calories a day for healing at first ... And of course you can't really eat that much extra hence the weight loss. You do need a lot of extra protein for healing so if you can drink some protein shakes that can help. Hang in.

A 1000 calories in total or 1000 calories on top of what you'd normally eat?

After my first surgery, I was eating again very quickly. By the second or third day, my parents were bringing me in Tesco sandwiches 'cos the meagre hospital food wasn't sufficient. The surgeon also prescribed me 3 Fortisips a day (Ensure-type drink). The Fortisips alone were 300 calories each so I probably was getting nearly 1000 extra calories a day.

After my second surgery, it was a completely different story. I felt sick as a dog from day 1 and it didn't lift. Vomited daily and had the most godawful cramping abdominal pain, which painkillers didn't touch at times. Zero appetite, couldn't eat a thing. Even sipping liquids was difficult. I became convinced I had caught a stomach bug (because one had been going round the ward), but my docs kept on telling me it was an ileus. In retrospect I think they were right and I was wrong.

I only forced myself to eat because it was the only way I was getting off that ward and after a week I was desperate to go home. Started with a slice of toast and marmite each morning - it took 2 hours to get it down and was about all I could manage for the day, aside from 3 bites of lunch. After three days of that my appetite did begin to return. Slowly at fast, but much faster once I got home and could eat food that I actually liked, instead of horrible NHS food.

All in all, I lost a stone (14lb) during that first week. The nurse who weighed me was so concerned she re-weighed me and got another nurse to check it out. I was less surprised, not least because it was the single most brutal experience I've been through in my life. I'd never lost my appetite so profoundly before, it was quite a scary experience.
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cupcakespinkgal
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Joined : Jun 2010
Posts : 1566
Posted 3/19/2016 7:42 AM (GMT -7)
I'm doing better. I don't feel quite as weak. My appetite has been good its more because of the ileus and food not moving down fast enough I could only eat so much. Minus a little pain when food moves I think the ileus is almost gone. My output has really thickened up so that has helped too.

Now if I could just get rid of this annoying drain!!!
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Christine1946
Veteran Member
Joined : Aug 2008
Posts : 5982
Posted 3/19/2016 9:56 AM (GMT -7)
Glad you are feeling better. Where do you have a drain? If your output is too thin, try applesauce or peanut butter. They seem to thicken things up for me. I weighed 113 when I came home from the hospital and I think I lost a bit of weight at first. I managed to gain it back within a few months. Take one day at a time. I am a mom to two grown daughters and grandmother to a 19 yr old granddaughter, and two grandsons ages 15 yrs and the baby (from youngest daughter) is only 19 months old. So, I can understand how your mom is feeling, but she needs to try to get her emotions under control for your benefit. Hang in there!!!
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cupcakespinkgal
Veteran Member
Joined : Jun 2010
Posts : 1566
Posted 3/19/2016 1:13 PM (GMT -7)
My drain is on my lower right side just below my stoma wafer. It messes with wearing PJ pants and is very close to my wafer which is uncomfortable. I did not have an abcess yet but did have a collection of fluid there so they wanted to still do the drain to prevent it from becoming an abcess.

I go Wednesday go have dye injected and see if they can remove it. I really hope they do because it is affecting my recovery. It comes out sideways and has a huge bag after the tubing and it is so sore. Plus makes changing my bag harder.

My mom is emotional, when things got tough in the hospital my dad or boyfriend would have to be the ones to help me.
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Christine1946
Veteran Member
Joined : Aug 2008
Posts : 5982
Posted 3/19/2016 3:57 PM (GMT -7)
My mom was emotional too. I remember years ago I had to go to the ER because of an adverse effect of a medication. I asked my dad to go in the ambulance with me because mom was a basket case. My youngest daughter is the same way. Glad I took after my dad, but I internalize my emotions, probably why I developed IBD.
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blueglass
Veteran Member
Joined : Dec 2010
Posts : 3332
Posted 3/19/2016 6:57 PM (GMT -7)

NiceCupOfTea said...


A 1000 calories in total or 1000 calories on top of what you'd normally eat?

On top of what you'd normally eat.... sorry if that wasn't clear....
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