Seeking Advice on Illeostomy Reversal Process

Hi

I'm new to this so please bear with me. I had an emergency Ileostomy 4 months ago because of grumbling Diverticulitis. I had the Gastrografin enema 2 days ago. I have pain on the left side where I presume the join is and where the Diverticulitis pain was. I am still releasing some of the enema. The Radiologist wouldn't give me the results and said I will see my surgeon. I spoke to the Stoma nurse this morning and he said I won't see the surgeon for results, I will remain on the waiting list for reversal if all is ok or be called if it's not. How am I supposed to get my results? I'm obviously keen to know what's going on within my body and if all is well. Another hurdle out of the way.

I spoke to a different Stoma nurse a few weeks ago and she said they can write to the surgeon in a few months regarding the reversal. The Stoma nurse this morning said they won't. I keep getting conflicting information.

I am really anxious for the reversal but really want to have it done but I don't want to wait 2 years. I was told this might be the case. I fully understand there are people more in need than me and of course come first.

I feel like I'm in limbo though. The Stoma nurse this morning suggested private and seemed unhelpful, basically tough, wait your turn.

I would definitely go private if I could afford it. Just feel a bit deflated by it all and it feels like a battle just to get the Radiology results or any hint of an idea when I can get my reversal.

Thank you for listening. Any replies would be much appreciated regarding similar experiences on the NHS

You should be able to get your radiology results from whichever doctor referred you for the procedure, usually within a day.

If you're having pain after any procedure, call your doctor because that needs to be followed up.

Sorry you're going through this. I hope you can get the help you need.

Hi Fleur1,

I have no idea how the NHS works, but if you really can't get your results... that sucks! Or as we say over here... WTF? Hopefully some of our UK friends on here will chime in and give you some insight into all this.

;O)

Bob

Thank you for the replies. It's greatly appreciated.

Sometimes the radiologist will tell you the result there and then. She told me before the procedure she wouldn't. I've had many CT scans over the last year and X-rays before where the radiologist has told me.

I've tried to ring my surgeon's secretary but no luck getting through.

The pain I have in the area now where the diverticulitis was (and I presume the join is) I had 3 weeks after the major surgery. I went to the hospital that time and had a CT scan with contrast to check it. All was ok. It eventually ebbed away. They said it could be adhesions. But it's back, more mildly but in the same area again after the enema.

This worries me that something may be wrong.

The stoma nurse said the enema may have irritated the area. Doesn't sound good for the reversal. I'm wondering what it will be like when my large bowel has to start working again.

I'll keep trying to contact them.

Thank you

If you're really in doubt, trust your gut (no pun intended) and head for the emergency room.

That being said, they would not have let you go home if there was something truly dangerous that they could identify or see, or even suspect. They would have had a physician come to you and explain what was going on as they admitted you to the hospital. Radiologists are not always the best people to be reading radiology results, believe it or not. They get a bit jaded with what they see day in and day out. I have had many times when the specialist who ordered the test has told me that their interpretation was completely different from the radiologists. I hope I have given you some advice that you can use.

Thank you.

The pain has gone today. It ebbed away like last time, thankfully.

I managed to get hold of my surgeon's secretary, and she said he will write to me with the results or I will be called to see him if anything's wrong! Fab!

Weeks of waiting and not knowing.

I'm wondering if anyone else has had pain after the Barium Enema to check the join? I would love to know of other people's experiences.

Hi Fleur,

It is interesting the differences in our medical systems. Here in the States, a radiologist rarely, if ever, tells you what they found. That's because their job is to interpret the scan data and give that interpretation to your doctor. He/she then adds that info to whatever else they know about your condition to form their prognosis on how to best deal with it. Now if you're seeing a radiologist to see if your bone is broken.......I guess they could give you a yes or no answer, but not in any case where more data has to be interpreted than just the scan.

I went back and read your initial post.........and I'm confused (not an uncommon thing). You said "I have pain on the left side where I presume the joint is and where the Diverticulitis pain was". What joint are you talking about? You said you had Diverticulitis and you also said you have a temporary ileostomy. Those two things don't make sense. Diverticulitis usually occurs in the descending colon, which is the last third of your colon that connects to your rectum. If the Diverticulitis is severe they usually cut out the diseased part, but make the cuts far enough away from the diseased area to prevent a reoccurrence. Then they sew the rectum side closed and route your colon to a stoma formed on your abdomen. Both sides of the cut should've been nice non-diseased bowel that they reconnected. But then you'd have a colostomy, not an ileostomy.......hence my confusion. Unless they sewed the colon halves back together and then cut the colon off above those cuts up near the small bowel..........to presumably let the colon heal and rest. Then you'd have an ileostomy.......but that sounds like an odd thing to do. So I'm not sure WHAT you really have sticking out of your abdomen. But regardless..........the part of your intestine that had the Diverticulitis should have been removed........unless they left some areas that weren't diseased that bad...........but that sounds kinda stupid to put you through all this only to have to do it again when that less diseased area gets worse. Bottom line is you shouldn't be having any more pain from Diverticulitis.........it'll be interesting to see what the scan shows. Please let us know.

;O)

Bob

I had diverticulitis of the sigmoid colon which is just before the rectum. I had emergency surgery with 10 cm of the sigmoid colon removed. I had a temporary ileostomy formed to allow the joined part of my large bowel to rest.

The horrendous diverticulitis pain I had was very low down in my sigmoid colon, to the left near my groin. It was also causing swelling of the uterus.

3 weeks after surgery I had the same pain in that area. I went back to the hospital, had a CT scan with contrast and they said the join looked ok. So clearly the pain was in the same area as the joined part of my bowel and where I had diverticulitis.

The pain after the barium enema was in the same place, where I had the diverticulitis and presumably where the join is (believe me, I know that pain and in the area I had it).

I haven't been told exact results when I've been for radiology appointments but I have said does everything look ok. Sometimes the radiologists have said yes.

That's all, I'm not sure why my post would confuse you.

It doesn't anymore... thanks! But I am curious what's going on with that pain you're having. Let us know what your doc says.

Thanks,

Bob

Yes, Bob, so am I. It's clearly not diverticulitis as that's been removed in surgery. It's definitely where the join is.

I was just trying to explain what has and is now going on in that area.

I was told after the CT scan with contrast 3 weeks after surgery that it may be adhesions.

Maybe the barium enema to check the join irritated it.

It is concerning that anything around there is causing pain though. I'm not sure it bodes well for the reversal as I don't want pain like that after they take down the stoma.

I am still unsure if I will be able to have the ileostomy reversed as I haven't received the results of the barium enema yet and I am unsure when I will either, which is really frustrating.

The NHS is on its knees at the moment and when I went to A&E the final time before I was rushed to surgery, I collapsed in A&E and was laid on the floor. I was told to get back into my wheelchair by various nurses who only gave me paracetamol as pain relief. I was told there were no beds. I couldn't physically sit any longer. The pain began to spread around my ribcage and chest. I think my body was beginning to go into shock.

Until they realized the severity of what was going on, then I was transferred to Majors.

I even had a letter from the surgeon after a previous admission to say I would need urgent treatment (which I showed them upon admission to A&E) should I develop diverticulitis pain again, etc. They left me sat in A&E for 5 hours plus. Until I eventually collapsed. The wait can be well over 10 hours.

I genuinely feel you could die in A&E over here and some of them genuinely wouldn't give a shit.

Hi Fleur

Sorry to hear you're having problems with medical issues and the wait you had to endure in the A&E. As you're aware, there is a huge demand for all NHS services; the staff are trying their best to deliver a service with a lack of staff, equipment, resources, and much more. I'm sure many of our friends in other domains would love to have free treatment, surgery, x-rays, CT, etc., which we Brits take for granted and pay nothing. So please, next time you have to visit any NHS services, spare a thought for others.

'Brits take for granted and pay nothing!!?? How uninformed and ignorant you are!

Brits pay for the NHS throughout their lifetime through tax and National Insurance. They are taxed and pay National Insurance on every single wage they get and that contributes partly to the NHS.

The amount my partner pays in tax and National Insurance each week is eye-watering! That's apart from myself.

At 51 years old and paying into the NHS for the last 33 years, I expect a service that at least enables me not to potentially die whilst I wait to receive treatment in A&E!!

Having not used the NHS or a hospital for most of the 51 years of my life!! Is that too much to expect?? After paying into it for 33 years.

There were nurses tapping away on their computers whilst I was laid on the floor next to them. Not one got up to help.

The only help I got was from the young nurse giving out medication who said herself she was left to deal with it and overwhelmed. Apathy is what you will find in the NHS. Not all but some.

I made a complaint to the hospital and they agreed the service was poor and apologized.

I think you should maybe understand what you're talking about and how insulting it is to say 'Brits don't pay for that service'

We Brits are one of the most taxed nations in the world.

Mostly getting services cut whilst paying more tax and National Insurance continually go up.

I would still love to hear from Caz67 on how she thinks the NHS is actually funded and why she thinks it's free!!

Maybe our beloved government pays for it out of the goodness of their own heart?

Next time you write such a patronizing post to others, at least have the decency to back it up with facts!

Maybe you, Caz, could spare a thought for the poor, hardworking Brit taxpayer of this country, putting many thousands in over a lifetime and getting naff all back when they need it!

Or they are expected to sit in queues next to people who have paid in nothing and expect to get the same treatment.

There isn't a choice to opt out of mandatory National Insurance Contributions or taxes on earnings either, so if anyone wanted to go private in this country, you are effectively paying twice!

Hi Fleur

Yeah, the NHS is free. You think your husband's and my tax and national insurance would cover the cost of everything? Yeah, right. What you seem to forget is part of the wages we pay for goes for the hospital, GP, pension, maternity, bereavement, and unemployment, public funding, education, welfare system, railway, road repairs. So don't call me ignorant.

Let me put it this way, your emergency stay in hospital, surgery, blood test, x-ray, CT would have taken all your husband's tax and NI. My post was not patronizing at all. I was highlighting some people don't think about how hard the staff work and breaks they miss, going home late, not to mention working through COVID, staying there for 13 nights to look after patients.

Ps Fleur

Unfortunately I have a job as a nurse so I am unable to be on the site 24hrs a day just to answer you. PPS Fleur if you don't like the way your treated in the NHS you can always go private oh wait I forgot you can't afford it so it looks like you are going to have to suck it up buttercup.

THE NHS IS NOT FREE AND IT NEVERWILL BE....IT IS FUNDED THROUGH THE TAX PAYER DUMB ARSE! WHETHER YOU LIKE IT OR NOT! ....how defensive! ..to quote ' i have a job as a nurse (doubtful) and iam unable to be on a site 24 hours a day just to answer you'.. did i ask YOU to answer me?? ...i hope to dear god i never come across YOU AS A NURSE if you actually are one! YOU are Exactly the problem within the NHS (ENTITLED!) like your doing us all a favour and your exactly what is wrong within it. You are both patronising to even have the gall to say 'IT'S FREE...is it fork!33 years of paying into that hell hole and we should be grateful for the crappy treatment we get! We've paid for that treatment and your wages a thousand times over! Your some special kind of thicko who has probably never had a job in your life. No one is actually that dumb to think the NHS is free...unless your some doley who has never had a job or paid into that system in their life and are just sacking it off and living off other people backs! You must be because even the dumb of the dumbest would never say the ''NHS IS FREE'....unless you've never worked!

Caz67....I would really love to know how you think the NHS is funded?? Without the deflection of Covid and all the other crap you spout!

Oh and btw CAZ67....your a clueless, patronising, thicko!...suck it up, buttercup!

Goes to show how much education you had in the past you need to wash your mouth with a bar of soap madam. You think you should not be paying tax and NI contributions because it goes to a crappy system hmm . I think you should do some research because out of the pittance we pay it also goes to welfare system, education, maternity, bereavement, pension. Do me a favour if you hate it that much go private. As for me yes I am a qualified nurse and dam proud of working in the NHS for 30 year's.

We pay for a crappy system and crappy people like you. Your an unemployed doley! Who do you think your talking to 'madam'....If you think the NHS 'is free' then your clearly some serious, deluded, special kinda thicko.

Ever heard of 'Council Tax' yea you probs don't pay that either. That pays for the police, Fire service and Social care etc. NI contributions pay for the NHS, some paying into it for over 30 years to receive shocking care and then we have the cheek (according to you) to complain. We also pay road tax, what do you think that pays for thicko? I have paid private TWICE and do you know why? Because the NHS is on it's arse. Partly because of people like you (if you actually do work there, which i doubt) and partly because it's top heavy and too many people are using it.

Stop trying to patronise people with your bs, it's you who needs to get an education and you still have not told me how the NHS is paid for??

You can't, can you 'madam? IT'S FREE lmao

I don't hate the NHS, theres some good people working in it and some very bad people also.

I do hate people like you trying to defend the indefensible and jumping on threads trying to dismiss genuine experiences and concerns people have had because your extremely patronising.

The NHS as it is does not work. It needs reforming or abolishing.

'Proud to be an NHS worker for 30 years' don't make me laugh! Lmao

Okay you have made your point pretty LOUD and CLEAR now do us a favour and jog on you immature little madam.

DUMB enough to even suggest the NHS is for free BIG MOUTH. Truly embarrassing!!!

Using the words 'Jog on' and 'madam' lmao...some chavvy nurse going on there! NOT! Fresh from a shithole.

Proud to be a tax payer of this country for the last 30 years!

Not so proud of the shocking service we get FOR FREE! LOL

IT'S ALL FOR FREE ACCORDING TO CAZ67!

YOU CAN'T ARGUE WITH THICKO!

I suggest you 'jog on, you patronisong madam'....you've embarrased yourself enough!