Chronic Pain and Surgery Options for Rectal Stump Issues

My ileostomy & rectal stump are now 8 years old, and were created due to sepsis. I had been ill for months, going in & out of the hospital, but during any of my admissions, I was never taken seriously and always discharged as soon as possible. This was especially the case on my last but one admission, which then led to me having to be readmitted for sepsis, as the consultant who discharged me that day (& had done countless times before) never even bothered to come & check on me before discharging me. I was admitted 3 days later with sepsis. I had contracted C-diff from the hospital, aspiration pneumonia & either toxic megacolon/UC from a reaction to the antibiotics the consultant had given me without seeing me. (He had also previously taken me to one side and told me my CVS was all in my head, that I wasn't ill at all. This was why he discharged me so quickly). My medical negligence claim failed, and the hospital still treated me the same way... like sh*t.

To get any treatment I've had to go privately, but I can't afford to do this indefinitely. Thankfully, my GP finally agreed to change where all my hospital referrals and appointments would be sent. So after 8 long years, I now finally have the chance to start again.

At the beginning of the year, I had my 1st appointment with a G.I. specialist after a 2½ year waiting list. It's been the same for all of my referrals, as I have multiple illnesses/chronic illnesses. As my previous hospital basically gaslighted me, I had NO treatment for anything for years, but now all of a sudden I have multiple hospital appointments popping up with new treatment plans & medications starting all the time. But back to my G.I. appointment, I had good news as the new consultant told me he would look into removing my rectal stump, and maybe moving my ileostomy to a better place (something I had been told wouldn't/couldn't be done) BUT that ALL my previous tests would have to be redone as he didn't trust anything (& I don't blame him). He also couldn't believe that the hospital had left such a long stump behind, and so wanted to make sure this was correct. 25 cm.

I had my rectal stump checked on the 9th of September (exactly 8 years to the day that I had left the ICU/hospital and come home following sepsis), not exactly what I wanted to be doing that day, as my PTSD came back full force.

I was given a fleet enema for my endoscopy appointment, but it caused severe stomach pain & cramping (& would have caused vomiting as well, if I hadn't taken all of my antiemetics plus extras). It was so painful that I had to ask/tell the nurse who was giving it to stop, even though less than ⅓ was given (but that seemed to be enough). Within a minute, instead of flushing out mucus, etc., it was just blood. Pure blood.

Thankfully, I had sedation for the procedure, as I was still in a lot of pain. The initial results show that the rectal stump (in the whole of the 25 cm) has defunctioning colitis with friable mucosa.

What worries me more is that even now, I'm still in pain & still passing blood. I've only seen the G.I. consultant once before & I don't have another appointment to see him yet, although the consultant who did the procedure took biopsies which are being sent to the G.I. so hopefully, I will get something more soon. I know if I go to see the GP they won't know what to do with me (normally they ask me what to do with me. Really helpful when you go to them for help).

Has this happened to anyone else? I used to use enemas every few weeks, but they've not worked on me for years. My rectal stump has been painful ALL the time but my previous hospital has always said nothing is wrong and refused to do anything (It's felt like I constantly need to go to the loo or that I have trapped wind I need to get rid of... for YEARS) which is why I want/need to get rid of this stump.

The consultant is also looking at doing multiple surgeries for me at the same time as I'm so complex. I'm asking for a hysterectomy at the same time as my stump removal, which the hospital is looking into for me as the incision wouldn't need to change (they will be reopening my original incision from my ribs to pelvic bone).

Hi there,

I am like you, a very complex patient with multiple problems and issues, and I have problems with doctors and hospitals taking me seriously. I wish I could be of more help, but I live in the US, and I hear health care is different where you live. When I got pushed aside as I did from age 19 until 34, telling me the same stuff was in my head and other stupid things, I left the doctor and found another one, and another, and another, until I found one that listened and believed me. I know the hardest part is when you're telling them what's wrong and they don't listen. It is frustrating and rough. I am really sorry you have to go through this. Now, is there a way you can call the GI doctor you're seeing and make an appointment? Tell them you're having blood come out and are in a lot of pain?

Thank you for your reply.......

I've received a call from the hospital who did the tests & scans (without me contacting them first) to say they want me in to discuss all the results they've had back so far. I asked if I could get them over the phone, and the question was just kind of ignored/put to one side and I was asked to come in for an appointment on Tuesday. Apparently, they have the results from the endoscopies (those two biopsies that were taken at the beginning of the month), but the in-depth CT results (done on the 18th) aren't quite ready yet, but even though they don't have those yet, they still want me in Tuesday afternoon. He was asking if I had anything booked in October, so there I was spouting dates I have booked for the whole month, plus dates for November when suddenly he stops me to say those dates are all fine, as they NEED me to come in on the 1st, which is this Tuesday coming. I've not seen the consultant since the 5th of April, so to suddenly be told that I NEED to come in next week is now worrying me just a bit.

I didn't get around to saying anything about the symptoms I've been experiencing still, so that will all be done at the appointment. I'm really happy I'm being seen, just worried that it's so quickly & has been booked in when not all the results have come back quite yet. (🤞 it's just me worrying about nothing, & that they are just trying to get through patients who have already had long delays before, and that if the surgery is going to happen, they want to go ahead and get scheduled in early for next year...that's what I'm hoping anyway)

I don't think I can cope living the rest of my life like this/in this constant pain knowing nothing will ever be done about it. Having this consultant look at my case/medical records etc., is all but my last hope of having this surgery done.

I've already been to every other hospital in my area which I could get referred to, and I've been turned down/refused by each and every one of them (multiple members of staff, from each hospital) too many rejections to remember, but each time, they've always used the same reason/excuse as to why they won't do the op which could help me live a better/slightly more pain-free life;

• because I have EDS type 3, which will/does affect my ability to heal

• because of the surgery I've already had in that area. It would no longer be 'normal' and it would put me at a higher risk of prolapse of my small amount of pelvic organs that are left.

• because I've had too many surgeries in that area (the emergency surgery for the ileostomy, when I was sterilized (laparoscopic), one abortion (laparoscopic due to abnormalities in the baby), two lots of ablation (which were both painful, and failed) and a hemorrhoid op.

But they are also taking ALL TESTS into account, so every single MRI, CT, colonoscopy, exploratory ops/tests, barium test/x-rays have all been counted against me.

The only other option is to look into getting it done privately. But as I've had some private consultations I already know it will (more than likely) be way out of my price range, I couldn't afford to stay seeing the private consultants who were helping me as it was. They gave me far better treatment, managed to diagnose, and help control conditions with medications that the NHS didn't understand/or didn't WANT to understand for YEARS, and had left me feeling completely uncared for (and gaslighted in certain hospitals as I was told nothing was wrong, it was all in my head. My notes still state my nausea and vomiting are anxiety-based, and not that I have CVS: Cyclical Vomiting Syndrome).

Xx♡xX

Thank you for your reply...

I've received a call from the hospital who did the tests and scans (without me contacting them first) to say they want me in to discuss all the results they've had back so far. I asked if I could get them over the phone, and the question was just kind of ignored/put to one side, and I was asked to come in for an appointment on Tuesday. Apparently, they have the results from the endoscopies (those two biopsies that were taken at the beginning of the month), but the in-depth CT results (done on the 18th) aren't quite ready yet. Even though they don't have those yet, they still want me in Tuesday afternoon. He was asking if I had anything booked in October, so there I was, spouting dates I have booked for the whole month, plus dates for November when suddenly he stops me to say those dates are all fine, as they NEED me to come in on the 1st, which is this Tuesday coming. I've not seen the consultant since the 5th of April, so to suddenly be told that I NEED to come in next week is now worrying me just a bit.

I didn't get around to saying anything about the symptoms I've been experiencing still, so that will all be done at the appointment. I'm really happy I'm being seen, just worried that it's so quickly and has been booked in when not all the results have come back quite yet. (🤞 it's just me worrying about nothing, and that they are just trying to get through patients who have already had long delays before, and that if the surgery is going to happen, they want to go ahead and get scheduled in early for next year...that's what I'm hoping anyway)

I don't think I can cope living the rest of my life like this/in this constant pain knowing nothing will ever be done about it. Having this consultant look at my case/medical records etc., is all but my last hope of having this surgery done.

I've already been to every other hospital in my area which I could get referred to, and I've been turned down/refused by each and every one of them (multiple members of staff, from each hospital) too many rejections to remember, but each time, they've always used the same reason/excuse as to why they won't do the op which could help me live a better/slightly more pain-free life:

• because I have EDS type 3, which will/does affect my ability to heal

• because of the surgery I've already had in that area. It would no longer be 'normal' and it would put me at a higher risk of prolapse of my small amount of pelvic organs that are left.

• because I've had too many surgeries in that area (the emergency surgery for the ileostomy, when I was sterilized (laparoscopic), one abortion (laparoscopic due to abnormalities in the baby), two lots of ablation (which were both painful, and failed) and a hemorrhoid op.

But they are also taking ALL TESTS into account, so every single MRI, CT, colonoscopy, exploratory ops/tests, barium test/x-rays have all been counted against me.

The only other option is to look into getting it done privately. But as I've had some private consultations I already know it will (more than likely) be way out of my price range, I couldn't afford to stay seeing the private consultants who were helping me as it was. They gave me far better treatment, managed to diagnose, and help control conditions with medications that the NHS didn't understand/or didn't WANT to understand for YEARS, and had left me feeling completely uncared for (and gaslighted in certain hospitals as I was told nothing was wrong, it was all in my head. My notes still state my nausea and vomiting are anxiety-based, and not that I have CVS: Cyclical Vomiting Syndrome).

Xx♡xX