Corrected: Update from Kerry

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16
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474
kerrycookie95
Jul 21, 2025 9:51 am

Still waiting for my plan from the MDT meeting. I ended up phoning this morning to speak to his secretary about it and tell her I'm getting worse now. If my input makes my output thicker, it really hurts no matter what I eat now, and I can't go on much longer. I feel terrible, so weak some days, and so tired and so bloody hungry. It's starting to get to me now. I don't usually let things get to me, but it's been over 6 months now coping with this and still have CVS (cyclic vomiting syndrome), which doesn't help with my weight. I will let you all know the outcome when I have one, and yes, I have nutrition milkshakes I live on at the minute. Big love to all stoma buddies.

IGGIE
Jul 21, 2025 11:56 am

Why don't you get a couple of other doctors to see you, or go to the emergency department of your local hospital?

IGGIE  

Posted by: Karen & Stella
Fay,

I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
Cheekymonkey111
Jul 21, 2025 12:01 pm

Sending you hugs and positive vibes. Hope you get it all sorted as soon as possible.

eefyjig
Jul 21, 2025 12:13 pm

Kerry, I can't imagine being in that holding pattern, waiting for actual help, and it's no wonder it's getting to you. I hope you get a response soon. That will definitely help emotionally, too. 🙏🏼

kerrycookie95
Jul 21, 2025 3:50 pm

Thanks for your kind words.

 

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kerrycookie95
Jul 21, 2025 3:55 pm

Well, I had a phone call from the secretary, and apparently, they had an MDT meeting, and Mr. Reid should have written to me before he went on holiday. So, I now have to wait at least another 3 weeks because he didn't. She did say to phone her next week, but I'm not getting my hopes up. I'm just starting to feel poorly, like before when I had bad infections. I hope it's not again. Thanks for your support. xx

kerrycookie95
Jul 21, 2025 4:00 pm

I've been to the emergency department a lot. They normally do fluids and pain relief and not a lot more because they don't know what to do with all my medical history. They put me on a ward last time for a week with no action until I had a camera test and surgical review, which was booked as an outpatient. I am thinking of going to my doctor, who knows what I am going through, and since it started, he was the only person who really listened and helped last time. But I am getting frustrated now.

SusanT
Jul 21, 2025 8:08 pm

This is getting beyond ridiculous. They need to do something or at least keep you updated on plans.

I hope they get their acts together and give you some feedback soon.

eefyjig
Jul 21, 2025 8:36 pm

I'm so sorry 😔

Ben38
Jul 21, 2025 9:09 pm

If it were me, I would be telling my GP to refer me to another consultant urgently before serious complications start and tell my GP I want full blood work done.

marshallkerry189
Jul 21, 2025 10:19 pm

Hi my sister, I know it is getting ridiculous now, and I am going to get in to see doctors tomorrow. I have been nauseous and vomiting once tonight with it all, so I think I am going to ask for full blood tests and see what they say. I have a feeling if I see Dr. Tom, I will get some action tomorrow like last time, but I only felt like that once before when my bowels were perforated, and I feel ill 🤒. But having you and others helps, thanks 😊.

SusanT
Jul 22, 2025 2:22 am

I'm so glad you are seeing someone. Be strong, my sister, and insist they do something.

infinitycastle52777
Jul 22, 2025 1:37 pm

Sorry to hear you are having such a hard time. Glad you have the nutrition shakes. Do keep us updated on your progress. Hopefully, your doctor will be able to do something about all of this. Hugs.

Megs
Aug 15, 2025 10:01 am

Hi Kerry,

This is like a repeat of my situation 4 years ago. I had my ileostomy in 1986 for UC. To cut a long story short, I was in constant pain, my weight was plummeting, I was sick, and I had no appetite, etc. I went to A&E on numerous occasions where it resembled a blockage. Lots of tests and letters were written. Something popped inside me at midnight in April 2021. I called 999 to my local hospital. My small intestine had burst. They found cancer near the ostomy exit and removed it. I was in the hospital for 5 weeks. They kept the same site as the original. I blame the NHS and overworked personnel. But keep me updated. Keep going to A&E.

marshallkerry189
Aug 16, 2025 12:07 am

Thank you so much. I feel so fed up at the minute. I don't think it helps; I can't eat properly, so I have no energy or the willpower at the minute to do anything. Just a tiny bit of gardening or housework does me in. I can eat Dairy Milk caramel bars and plain biscuits, so I'm living off them and my shakes at the moment. Thank you for your support. ☺️

Megs
Aug 16, 2025 7:07 am

Hope something gets done soon. Do you drink okay and keep hydrated? I survived on packet Knorr chicken noodle soup. It was more or less the only thing I fancied. Caramel bars and plain biscuits are good.

My fingers are crossed for you. ❤❤❤

marshallkerry189
Aug 19, 2025 8:57 pm

Yes, drinks and broth and things like tomato soup don't hurt, so I do this a lot and plenty of water, as I have kidney disease 3a. Also, thank you. 😊