Stabbing Pain Near Stoma - Seeking Answers

Hi!
I made my first post a few days ago with my story and some questions but it was very long. But I have one question. I wondered if anyone knew what this pain could be.

I've had my ileostomy since December 6th, 2021. I had 11 surgeries in 11 weeks.
A few months ago, I started getting this stabbing pain to the right of my stoma about an inch away.
It was a very minor pain before, so I didn't take much notice and thought it could just be healing.
However, over time it got a lot worse. I feel it most days and some days are manageable, and others it really hurts.
I'm under 2 surgeons at 2 hospitals and was told to contact the one doing the investigations. It was September when I contacted him, and he left me a voicemail to say the pain is probably "a bulge in the muscle and not to worry unless I get a blockage"

He hasn't examined me.
I spoke to my stoma nurse about this after this voicemail, and she said it sounds like he's saying it's a parastomal hernia but neither of us could see a bulge.

I've just tried to get on with it because the surgeon didn't seem too concerned, but some days are worse than others. I didn't think about seeking any other medical attention because my surgeon didn't seem concerned.

A few days ago, I had a bad day with the pain, it was also burning. I changed my bag in case I had a breach, which I have often, and there was no problems with my skin. My stoma nurse came out again yesterday and can't see any problem with my skin and can't see a reason for the pain, so think it's internal.
She has said if it gets bad again to go to a e if it's before I speak to my surgeon again. I have an appointment with that surgeon on 7th December, but it's only a phone call appointment so again I won't be examined.
I'm very worried about going to a e because of trauma from my 11-week and 5-day hospital stay and because I was sent away from a e just over a week before my bowel perforation because I just had sickness and diarrhea, so worry I'll be sent away again.

Some days I feel like it has a general ache from the area.

But the worst pain is the stabbing. It feels like someone is literally stabbing me with a knife repeatedly.
I've kept track of what I've been eating and can't find any pattern nor with any pattern of any physical activity I have done.
Does anyone have any idea what this could be?
Thank you!

I can understand why you don't want to go to the e, and I don't know your laws there. But if they try to say you don't pass triage, can you tell them last time you sent me away I had bowel perforation, do you really want to make that mistake again when a nurse sent me and you could be facing a lawsuit.

Honestly, they probably would have been sued in this country.

Please be safe, I think your nurse is being wise.

Hello Bethstanley.

With the state of A&E services at present, I would be inclined to try another approach.

Your post on here is very descriptive and could be easily adapted to provide the basis for a letter to your GP (with a copy to your stoma nurse and your surgeon.) asking what steps should be taken next to ascertain what is causing your pain.
I have found that my GP responds quite quickly to written letters, even if it is to make a referral to the hospital specialist for specific checks.

There are many things that can cause the stabbing pain you describe like the healing process, strictures, hernias and the like. 
I had an annoying ‘stabbing-pain’ twice in different specific hard ‘spots’ that appeared sometime after my heart operation. I pressed on one of them and a small end of ‘catgut’ appeared (like a blackhead would when squeezed) I caught this end, and with some artery tweezers, pulled it slowly outwards. The catgut was about nine inches long and had obviously not dissolved!!
The second ‘spot’ was not squeezable, but I presumed that it probably had the same sort of cause. I left it for a few months and the pain diminished.
There have been far too many incidents reported where surgeons (and their assistants) have left items inside people after sowing them up, so don’t be fobbed off by denials and excuses.  
Really, these things should be investigated (and rectified) properly by the medics, but I like to try things for myself when the official ‘system’ is not working effectively.
If things go wrong for me when I DIY, I can be reassured that the medics will ‘happy’ to sort things out and lay the blame on me and DIY. However, the point is that they would have sorted it! (& probably quicker than if I had just complained in the first place).

Best wishes

Bill

My acceptance of pain and two different doctors "practicing medicine" is the very reason I am sporting a stoma today. The first doc said it was a spur on my spine. I went home shaking my head in total doubt and disbelief. Because the pain eventually subsided, I forgot about it. Fast forward several years later - pain again and a second doc said it was a muscle spasm and gave me painkillers...shortly thereafter I was sent to the hospital by ambulance (a 60-mile ride) on two different occasions. The last trip resulted in emergency surgery. Turns out it was a cyst the size of an orange - (no doubt growing over the years since I was told it was a spur). It was removed along with 12" of my colon, my right ovary, and my appendix. Yes, I love to blame the docs but in reality it was my fault. When the first doc said it was a spur - I was sure it was NOT. I now regret not investigating at that time. If I had used my own good sense, I believe I may have stopped the final outcome. jb

Tips on Hernia Prevention with Collin | Hollister

With as much surgery as you've had, it could possibly be scar adhesions. I had this after my surgery. I had to have surgery to remove these. I agree with the others. You can't afford to be too timid when your health is at stake.

Thank you, that's a good idea.
I think I could in theory take some form of action against them, but I've always been worried about doing so. But I do want to prevent it happening to someone again.
People involved in my care told my mum when I was very ill I might not have ended up needing emergency surgery and a permanent stoma if they just saw me when my problems started, and that is really difficult to live with.

Yes, I'm very reluctant to go to a&e. I've only been if there has been a great need.
I will try the letter approach.
I have spoken to my GP about this and their response was a less than 5-minute phone call and a prescription of 100 cocodamol which made no difference.

My surgeon knows and hasn't examined me but suggests a bulge in the muscle and says it will be fine unless I get a blockage.

I will try the letter approach but I honestly don't see myself getting anywhere with how let down I've been in the last year. It's taken a year for them to investigate my foot drop despite it getting worse and appointments regarding this.

Thank you

I'm sorry that happened.
I've also been given painkillers but they've made no difference.

I had a phone call with my GP a few months ago for the pain when it was really bad one day (GP is always the first option in England) and they spent less than 5 minutes on the phone with me and just prescribed 100 co-codamol.
I have followed up this with my surgeon but haven't got anywhere there either, unfortunately.

Thank you.
Sorry, I don't know much about scar adhesions. Is this the sort of pain these cause?

Hello Bethstanley.

Letters, (from my point of view) are not simply informative devices, they are 'potential evidence' for potential court cases.
If they are acted upon and the problem is resolved, then they are reduced to being informative correspondence.
If, however, they are ignored or diminished in the content value, and something goes wrong as a result, then they are the bedrock of a legal case. 

With all bureaucratic 'systems' like the law, medical systems, insurance, etc., etc. there is an unwritten dictate that goes something along the lines that "If it's not written down - then it didn't happen!"  What happens is the correspondence on their side gets conveniently 'lost' in some way and they try to deny that you ever communicated with them about the problems.

I see it as my responsibility to keep all correspondence and, what I do if I have to write, again and again, is to refer specifically to each of the previous letters or phone calls, etc in a list before coming to the up-to-date reason for the letter. I usually preface the list with "According to my records----" This way, the legal beagles would only have to read the very last letter to understand what went on before. They don't like wading through too much writing/evidence.
These types of letters (or emails) are instantly recognisable as forerunners to legal proceedings, without ever having to mention that this is what might happen in the future. 
Very occasionally, I involve their 'complaints procedures’. with the conviction/experience that they are a complete waste of time, but they do also constitute valid 'evidence'.

I leave you with just one of my rhymes on that subject 

Best wishes

Bill 

COMPLAINTS PROCEDURES.

Doing nothing is our main aim
so you must learn to play this game.
 Defensively the number one
is to pretend it did not come.

It’s easy when it’s a phone call
just don’t do anything at all.
We know it sounds like a cliché
but listen to what they have to say.

Make out you’re taking down details
with everything that that entails.
Then convincingly you say
it will be sorted straight away.

Then when the phone’s back on the hook
you can get back to read your book.
If nothing’s written down you may
deny whatever people say.

If they deem to ring some more
repeat procedures as before.
This tactic is a well-tried game
so we don’t know and you’re to blame.

When we have persistent ones
we will bring out our bigger guns.
People trained to ooze goodwill
yet still do nothing with great skill.

We’ll correspond with smarm and charm
to keep them calm and then disarm.
And hopefully, they will withdraw
all complaints that made them sore.

But if they really will persist
with complaints that still exist.
Then we’ll try a different tack
to simply try to knock them back. 

We’ll protest it’s been their fault
so correspondence now must halt.
We’ll get together with one voice
and make out we have no choice.

Then future correspondence might 
be binned or kept well out of sight.
This way we’ve played a blinding game
at doing nothing whilst laying blame.

                                                 B. Withers 2014
               (P. 75  in: A Prelude To Bullying 2016)