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

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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Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara, Sulfasalazine, and rotating antibiotics

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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Marianne- age 47
DX Pancolitis in 2005. Family history of UC. Symptoms started shortly after I quit smoking
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs! Very happy j-poucher

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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53 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound Sept 2011. Wound finally all closed Feb 2014. Exploratory surgery for obstructions Dec 2014, unplanned surgery for parastomal hernia April 2015; stoma moved to other side. Probably still have a hernia, but doing well.

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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Dx Crohn's in summer of 2000. (Yay )
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Officially flaring again. The fun never begins.

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!!!

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.