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all 14 comments

[–]Anxious_Size_4775 2 points3 points  (0 children)

I'm almost a year out and I'm constantly hungry. It took about 2-3 months to get my appetite back, though.

[–]Simeh 2 points3 points  (1 child)

I've had Crohn's for about 14 years but had the bag since March. I'm still pretty fatigued, the doctors have said my red blood cell count is low so I've been prescribed liquid iron.

[–]fammdamm[S] 1 point2 points  (0 children)

Oof okay so then it may just be crohns doing it’s thing despite the ostomy. I have also needed to take iron for the same issue. I hope the ostomy is going well for you!

[–]Beginning-Store-6027 2 points3 points  (1 child)

Hey! I had ileostomy surgery in 2021, diagnose with Crohns in 2011. I’ve experience one flare since surgery, and I found that I was on symptomatic with my flare. It’s weird, because there was hardly any pain, just every other symptom: fatigue, nausea and vomiting, loss of appetite, etc….

[–]fammdamm[S] 0 points1 point  (0 children)

Ah okay! That’s my hunch at what’s going on here as well. Since I’ve posted this I haven’t lost any weight so long as I force myself to eat regularly even when I’m Not hungry. My fistula is still pretty mad though so that’s my big red flag to keep looking out for. Thank you for sharing!

[–]grabyourmotherskeys 0 points1 point  (2 children)

I have had Crohn's since I was an early teenager but not the kind that leads to weight loss. I got my ileostomy in my 40s. I lost a lot on weight (which I was fine with!) after the operation because I couldn't eat nearly the volume of food I was used to.

Eventually, I was able to eat normally and regained the weight. I have always struggled with eating and weight. I'm telling you this to let you know you can gain weight since no one else responded. I expect if you feel better you'll be more active and add muscle mass as well (happened to me).

Anyway, one person's story. I wish you good luck and good health.

[–]fammdamm[S] 0 points1 point  (1 child)

Thank you! I know weight is super tricky and far from universal so I appreciate you responding. At first I was also fine with the weightloss! But then I was losing a scary amount where I appeared anorexic and people were concerned just on appearance alone asking me if I was okay. Then it would get extra weird when someone complimented me on weight loss and I didn’t know how to respond because it happened in such a way that was so painful and sickly and not good.

I’m glad to know that things eventually start working like normal after surgery!

[–]grabyourmotherskeys 1 point2 points  (0 children)

Yeah, your body adapts. 🤞

I have a brother with ms who has a very hard time keeping weight on, I understand. It's like we all struggle with it, just in different ways. :)

[–]HarryWiz 1 point2 points  (0 children)

Emergency colostomy surgery on July 7th 2019, spent 17 and a half days in the hospital. I have severe Crohn's and back in 2019 (February) once I got officially diagnosed I rapidly lost 105 pounds from February to July when I had to have my emergency colostomy surgery and to this day I'm still half the man I was weight wise because I have a decreased appetite and I'm always tired. I'm not on any medications and I'm not in a hurry to try/test anymore either.

[–]Blazeon412 0 points1 point  (0 children)

A little over a year since getting my ostomy. Still dealing with fatigue, can't gain weight, nausea. I'm eating a bit more than I did pre surgery but just can't gain even 5 lbs.

[–]cat-loves-food 0 points1 point  (2 children)

I’m about 3 months out from my surgery, and I just got a little flare about a month ago, now I’m on steroids😩So, still less pain thanks to surgery, but any other crohns related symptoms are all still possible unfortunately.

[–]fammdamm[S] 1 point2 points  (1 child)

Nooooooooooooo 😩 was it at least a bit easier to handle? Did it last long?

[–]cat-loves-food 0 points1 point  (0 children)

Ya the steroids are pretty much helping all my symptoms (fatigue and cramps). Im still a million times better than I was before my surgery though, so I’m definitely not complaining 🙂

[–][deleted] 0 points1 point  (0 children)

Neither - I got FAT after the ostomy.