Quick update from Kerry

Had all my scans. I got a nutrition appointment tomorrow to see how they can support me with gaining weight so I can have surgery on Reggie. He is so small now; they have never seen one shrink that much, apparently. So, I am definitely having that done, but I am too malnourished at the moment. They won't do it because of too many risks, but it is at the point where everything hurts now apart from liquids. So, not great at the minute, but hanging on. Big loves to all on this site, but especially my sister Susan xx. Has anyone heard of (SBS) short bowel syndrome? Please reply if so xxx

I'm glad they are planning to help you. Hang on, the end is in sight.

You named your stoma Reggie? (I named mine Pepper.) I'm not sure what short bowel syndrome is, but I hope you'll be able to get the help you need soon. Have they figured out why you're having trouble gaining weight?

Good to hear from you, Kerry. Sounds like your medical team is on top of your situation. 🙏🏼

Hi Kerry, I hope things are moving in the right direction for you now. We do have a member, 30Bob, who has short bowel syndrome and is very knowledgeable. Hopefully, he will chime in on this thread.

Terry

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi hun, well, quick msg: I had an appointment with the nutrition nurse and feel like I'm going backwards. I felt like she didn't think I was that bad, but she doesn't have the pain when eating. It's easy for her. I left very annoyed, frustrated, and upset. Now I have to have a swallow scan test, which I don't see the point of. It's my output that hurts, not intake. Please, any suggestions of what to do would be very helpful. xx If I didn't have this site or my music, I would have probably broken by now, but I'm not one to give up until I'm too ill. xxx

Kerry, as I'm reading your reply to Susan, I'm having such empathy for you. Your nutrition nurse didn't think you were that bad? Don't you wish you could simulate your pain onto her so she could see? I don't have the same medical issues as you, but I'm familiar with that feeling of sitting there, listening to a medical professional, and thinking, "No, you're not listening, you don't understand, that's not it at all." I was once told that my abdominal pain was coming from my gallbladder and that it should be removed. I KNEW that wasn't the source - my pain was in a different area of my abdomen - but I didn't know where it WAS coming from. Had my gallbladder out and still had the pain. I wanted to say, "Duh, I told you so!" So I just wanted to say that you're not alone in feeling discounted by a medical person.🌷

I'm so sorry! You deserve better than that. I've felt discounted and ignored by medical professionals, and it's much more frustrating than other situations. You go to these people for help, and you rely on them to do their jobs.

Someone needs to figure out why eating is hurting so much. Enough is enough.

Sending you love and hugs.

Hi. It should never hurt to eat or when you go. We know our bodies better than they do. If you can't put weight on, it's tough and scary. Been there myself. Keep pushing.

I have a doctor's appointment tomorrow, and I am going to ask to be admitted. I can't go on like this. I have only had cups of tea and half of a chicken mayo sandwich, then a bloody milkshake, and I am now sitting in horrific pain, in tears. I have been like this for 3 hours now and am really getting fed up. xx

Thank you, and yes, I wish I could have given her my pain just once so she could experience it. I know it sounds horrible, but she made me feel like it was all in my head. I might even eat half a sandwich before the doctors; then they will see how it affects me, but I shouldn't have to do that. I am going to ask to be admitted. I can't go on like this.

Guidelines for the management of patients with a short bowel

https://gut.bmj.com/content/55/suppl_4/iv1

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