consultation and operation for a stoma REVERSAL

This is very long winded but I want to tell my story in greater detail so everyone can try understand what I am dealing with right at this moment in time.

As all my friends are aware I’ve been through hell and back since 2021. In and out of hospital not having a diagnosis. I followed a girl on ticktok and realised she had same problems as me. I have always suffered with cystic fibrosis which has caused me to have bowel problems all my life. When I was just two days old I got diagnosed with cf and had to have a colostomy formation. I got that reversed when I was 8/9 months old. the surgeon always stated that I would possibly need one in the future. Skip 23 years later I started getting blood in my stool. I knew something wasn’t right. I tried to do everything in my power to get this ileostomy stoma formation because the power of social media I followed this girl on ticktok called “stoma babe” I couldn’t believe my eyes. I finally found someone with all the same symptoms as me and the hell I was going through. No one would listen to me I had went from 8 stone 5 to 6 stone in the space of 7 weeks. I was being fed through an NG TUBE at the time I looked like I was 9 months pregnant I was huge and I’ve only got a tiny frame as it was.

A few months later I got transferred to the cystic fibrosis team in Manchester wythenshawe that was where they specialised in cystic fibrosis. Because I wasn’t being listen to at the hospital I was at right that current time. My doctor even tried sectioning me because he thought I was “fabricating my illness” in his words.

When I went to wythenshawe - They were outstanding they referred me to a surgeon at the end of 2022 and I ended up being taken into hospital at wythenshawe feb 2023 and had to be prepped post op because of my chest and other initial problems. I had the ileostomy stoma formation in June 2023. I was absolutely filled with joy I was so so happy I finally got what I’d been dreaming for.

Until after surgery I had got put into intensive care due to complications. I always knew I was going on there but thought it was going to be a few days then on a surgical ward then home. I ended up on there for a few weeks and then in for months on the high dependency surgical ward. I left the Manchester wythenshawe hospital in August/September time 2023 then.

I got rushed into Blackpool Victoria hospital just 2 days after being out of hospital where I ended up on ITU due to dehydration and stoma output. I was loosing 3/4 litres a day. I had 3/4 seizures when I was admitted into BV Hospital because my sodium was diranged and my bloods were all over the place. I even lost my memory for a few days, the doctor said I was very lucky to pull through my friends and family got told I wouldn't make it through the night because my seizures were so bad, and if I did I could have had brain damage.

I got referred to an amazing team in Salford. The intestinal failure unit it’s for people with high output stomas and needing fluids/electrolyte replacement.

Fast forward now feb 2024 I am STILL in hospital since the beginning of 2023 and most part of 2022 with only going home a few weeks ago on TPN that Salford had sorted for me. I then get re admitted with a chest infection so I am back in wythenshawe recieving iv antibiotics.

I am on TPN (total parental nutrition) total parenteral nutrition is a medication used to manage and treat malnourishment. It is in the nutrition class of drugs. Total parenteral nutrition is indicated when there is impaired gastrointestinal function and contraindications to enteral nutrition. Total parenteral nutrition (TPN) is when the IV administered nutrition is the only source of nutrition the patient is receiving. This activity describes the indications, action, and contraindications for total parenteral nutrition as a valuable agent in managing malnourishment and the nonfunctional gastrointestinal system. In addition, this activity will highlight the mechanism of action, adverse event profile, and other key factors (e.g., off-label uses, dosing, pharmacodynamics, pharmacokinetics, monitoring, relevant interactions) pertinent for members of the interprofessional team in the management of patients with malnourishment and nonfunctional gastrointestinal system and related conditions.

I now have been told that I need my stoma reversing and if I don’t get it reversed in the next 6 months I will not be here this time next year. My kidney and liver function is so bad they’ve even spoken about kidney dialysis which is also required to be in hospital 5 days a week. I am really desperate to do everything and anything I can to try raise the funds to get this ileostomy stoma reversal sooner rather than later because if I was to still be here this time next year I am worried by that point I won't be able to have the surgery because I will have more complications and be very unwell.

I have a 9 year old daughter that is missing her mum and it breaks my heart that right now I am critical wishing and hoping for a miracle. I had a cardiac arrest back in November when I was first transfered to Salford and I could have another one at any point as I’m requiring a very large amount of potassium. TPN is no good for someone with complications already and cystic fibrosis. And if I wait for nhs to help me it will take months and by then I honestly don’t even think I’ll be well enough for this treatment.

I’ve found a couple of clinics in the uk that differ between £4500-£15000 all in all. I am going to try raise the initial funds £850 first for the consultation- any additional money will be there for everything going forward and the above. That includes the pre op the consultation the surgery the aftercare and if any complications happen. My doctor from the cystic fibrosis team said obviously it is going to cost me a lot more because I am very complex case. But I know for a fact there has to be a surgeon in the uk that is willing to do with for me.

I am going home on Saturday on tpn - the longer I am on this the worse my organs are going to get and I will end up being too poorly in the end to even have it done. I can’t do anything or go anywhere I am hooked up to my TPN 7 nights a week and severely exhausted and weak because my bloods are so deranged all the time and to wait for a surgery that might not even happen for months on end.

My father has been amazing he’s moved into my house to look after me I am very exhausted I also have nurse who come out twice a day and as everyone can imagine this is impacting my mental and physical health. My family and my friends. I just want to get this reversal done and try live a some what normal life. Cystic fibrosis is a very horrible disease that cuts the life span enormously as it is I am only 28 and I know I have got a lot of life in me if I fight this and if I have this reversal. Even if it’s £1 I would be hugely grateful.

I have received so much support as it is.

I cannot believe how many people love and care for me I really am blessed. If it wasn't for the OUTSTANDING support I do not know where I would be, I am bless to even. still be here tbh ..

I know there a lot of people out there that are worse than me. But the power of social media is absolutely crazy and so many people are wanting to help and have told me to do this for myself, I have spent all of my life helping other people and just being a good person, no-one deserves to have to go through this, or anyone that's close around me and I’m really clutching at straws. So anything even a share I’d be very grateful.

Many thanks

Leah x