Surgery being refused.... just me?

Hi....as well as having my ileostomy, I also have a whole host of Chronic illnesses. These have a massive impact on my day to day life & some effect how my ileostomy functions. My ileostomy doesn't functioned the way it should, instead I'm faced with a lot of partial blockages for no reason, having a severely restricted diet and an ileostomy which causes a lot of pain & discomfort. The pain has got worse over the years,and is mainly caused by 2 things. The 1st: I can feel  almost everything that comes through my stoma.The 2nd: my rectal stump, this has always caused me issues, but the pain has been getting worse over the years.it feels like I have really bad trapped wind(I dont have any trapped wind at all*)& nothing helps with the pain at all.

A bit of background: My ileostomy was created due to Sepsis in August 2016.... it was, more than likely, something that could have been prevented. In 2016, the hospital didnt is run any tests on me to see what was causing any of the multiple admissions I'd had(over the course of 4 months, I was admitted via ambulance 2-3 times a month).Even hospital staff knew who I was: Health care workers Cleaners,Porters,etc,all knowing me & asking why I was back/if I had left, which ward I was now on.Nursing staff knowing all meds,fuids,etc I needed before they had been written up.Each time I was admitted it was with exactly the same symptom:Severe vomiting & diarrhea. Stomach pains, unable to eat or drink anything.Extreme dehydration Dangerously low Potassium level(Heart attack low)& low BP, but each admission was the same story. I was given just enough to barely be rehydrated & have my Potassium levels return to the very lowest of normal before being discharged once more.I was barely able keep down & cup of tea & maybe eat a spoon of icecream,each time being told I was fine,nothing was wrong(my notes saying I was eating & drinking with no issues when discharged).Not once were any of my symptoms looked into.The consultant instead told me I was Self Harming/had Bulimia.Every time I was admitted,I waited 1-3 days hoping it would clear,not wanting to be admitted again.I'm unsure how you self harm to make uncontrollable vomiting & diarrhea every 5-10mins 24/7 for 5-10days without any evidence.I live in constant fear this type of 'episode' will start again.I was diagnosed with CVS in 2021, to manage it I take 4 different antiemetics×3times a day to help with nausea& vomiting.I constantly feel sick).No tests were run,so I just kept ending up back there again&again right up until I became Septic&Comatosed. I'm here because I was saved by Family, the Paramedics&1st responder & my GP(who came to my house,treated me before the paramedics arrived&relayed my info to the hospital). Almost all of my large bowel was necrotic when it was removed during surgery.

So to get back on to topic.... even after having such appalling treatment that then lead to having to have a large, invasive & open emergency surgery, any medical treatment or care received by that hospital or any other would be a lot better. This isn't he case, which is both frustrating and extremely tiring as I'm constantly fighting to get any type of half decent medical care. In my other posts I've said that I had to wait 2½years to change hospitals to get treatment. In the beginning this was looking very positive, with new tests being run (both a MRI & a CT) then me being diagnosed with a whole host of new illnesses. When I originally asked about having my rectal stump the new hospital seemed fine with doing this, and said they would do it as part of a much larger joint operation, as I  also listed as needing/wanting a hysterectomy. They weren't sure/didn't want to rely on my previous hospitals scans or the results they gave, and so ran there own. Having the tests done is when I had unexpected reactions due to the lack of care I had received since 2016 & due to the way my rectal stump had been made/created. The enema,which needed to be done so the tests could be carried out. After only ¼ or less was in, the enema caused severe pain/stomach pain, vomiting, a sudden & severe drop in BP & LOTS of bleeding: dark-bright red blood.Not old blood,but fresh blood(the bleeding lasted just under 2wks). When the results came back I was told I NEEDED to have the surgery for both my rectal stump and the hysterectomy. Scans show Endometriosis and Adenomyosis throughout my pelvic area, which are also effecting the stump. More worryingly was that the stump is over 25cm long and has been stitched to my the front of my pelvic wall. I've been told, is the most likely the cause of my pain, with cysts and adhesions throughout. The only 'cure' surgery. The same for my Endometriosis, which I've tried unsuccessfully to manage with medications(nothing has helped,and now because of hormone treatments I'm in an even worse position than I was before). Both the G.I/Liver Consultant & the Gynaecologist Consultant have said surgery is my only option...... But then told me that they WILL NOT carry out the surgery. I'm in constant pain, with surgery being the ONLY option to help and the doctors that know this are not willing to do it. Is this something others experience?  I see these consultants every 6mths. They meet to discuss my case with a board of other surgeons after my appointment, they decide if it goes ahead or not(always not)However since they have been looking at my case & deciding whether or not to go ahead,they have never updated the original scans. This means they are using & deciding my future from scans done in June2023. Since then I've tried multiple medications which they prescribed* & my general health has deteriorated,but they haven't repeated any scans. I did ask if they would carry out either surgery separately, which would then reduce the 'risk' they believe I've developed at some point & is apparently linked to one of my illnesses, but they can't tell me what exactly this 'so called risk' is. (I've NEVER previously had any of my illnesses effect me in a way that I'm unable to have surgery....I survived emergency surgery with 10-20% chance of survival. I was back home after 15days: I was supposed to still be in a coma for 14days). Is it common for other to get refused surgery? I'm just unsure if its me or if the hospital not knowing what they are doing? Do I need to be referred to somewhere more specialised? I'm not sure I'll be able to, as I don't even have a stoma nurse/team to contact or help me when anything goes wrong(I no longer know where to go if I need to go to hospital if something is wrong. Last week I had a blockage for over 24hrs.I waited,as I just didn't know where I'd go if I went in. Luckily,It started clearly after that,but took another 72hrs to fully clear.

(*Originally it was said I would try medications,but if they didn't work, they would change to a surgical procedure instead. I tried the medications only to then be told they won't carry out any type of surgery.)

G-Day gembally1982,

I feel so sad that you're going through all this. You said near the end of your message, "Do you need to be referred to somewhere more specialized?" The answer is YES, and do it as soon as you can.

It sounds like where you have been going is full of un-specialized, uncaring people.

Start the ball rolling today and don't take NO for an answer.

Please keep us up to date.

Sending good vibes to help you.

Regards, IGGIE

1) Request transfer to a specialized treatment center or center of excellence.

2) Demand to be told why they won't perform surgery. It is possible there are risks you are unaware of, but there's no excuse for not giving you a detailed explanation of those risks, particularly if those risks are preventing surgery. You need to understand these risks so you can discuss them with your new doctors.

Let us know how you're getting on.

Hi, my ileostomy sounds just like yours. I also have CVS; had it for 25 years, which has really affected my body. I can't eat solid foods as the pain is excruciating and I'm under revision at the minute with scans and tests. Like you, you are not alone in this, my friend. If you just want to chat or have any questions, please feel free to contact me, Kerry. 😉 Big hugs.

I'm sorry you are having such a rough time! I pray things can change for you. I agree that you should seek another health group that can give you the relief you deserve! We all love you!

Living with Your Ostomy | Hollister

Thank you so much for your replies. I originally replied a few days ago, but for some reason, it wouldn't post my response??.

I gather from other people you all still have a stoma care team in place for whenever this is needed? Since I never had one before the surgery (as it wasn't planned), I didn't end up having a stoma care team after my surgery either. The most I ever had/received was a 'stoma nurse' provided by the company that supplies all of my products. This meant that I used to have someone from Oakmed Goldcare come to my house to check on me and see how I was healing. She would recommend products and give samples, but I've NEVER had a hospital-specific nurse or surgeon to go to when I'm in need of help.

In regards to maybe going somewhere else, I believe there would be only one option for me in the UK. That would be St. Marks Intestinal Failure Hospital, London. They take complex cases, but only by referral, so I would need BOTH the G.I. consultant at the BRI (maybe my gynecologist as well) and also my GP for some reason that posted before I had finished (better than deleting everything I had written like the last time though).

My consultant and GP would need to refer me across to be treated there; otherwise, I wouldn't be able to get any treatment. I'm concerned my current G.I. consultant won't do the referral (even though he's stated he feels the operation is needed and is beyond his capabilities). This has previously happened to me before, leaving me in pain for over 8 years (I finally got a different specialist to agree to refer me instead, completely annoying the G.I. I had been under: she believed EDS didn't affect internal organs).

Has anyone been treated at St. Marks Hospital in London? I'm now in desperate need to just be treated and then see what else may be wrong. This has been such a BIG part of my life for so long; I wouldn't know if it's covering up anything else.

Thank you so much for taking the time to read this. Xx♡xX

Glad to hear you have someone to refer you. You should also request your medical records from your reluctant-to-refer doctors. Find out what your problems are and have your surgeon explain what the surgery will attempt to accomplish and what the risks are. As Jimmy Valvano would say, "Don't give up, don't ever give up."

Hi gembally

You sound as if you've had the most horrendous time.

You definitely should have an assigned stoma nurse; mine is forever, as long as I need her, or her colleagues if she's not available.

I would ask for one next time you see the consultant.

I wish you luck in getting your referral to St. Marks; hope it goes well.

A relative of mine has a complicated medical issue and has decided to go private as the NHS waiting times are so horrific.

I had emergency surgery for an ileostomy in 2019, and I've had free access to a stoma nurse through the NHS ever since.

Is it possible for you to be allocated a medical advocate? It might make a difference if it isn't ‘just' the patient who is interacting with the consultants and doctors.

I hope you find an effective treatment.