Corrected: Update from Kerry

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.

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

IGGIE  

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

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. 🙏🏼

Thanks for your kind words.

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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

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.

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.

I'm so sorry 😔

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.

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 😊.

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

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.

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.

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. ☺️

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. ❤❤❤

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. 😊