Awfull news....don't want bag need second advice

Hi

I went for a colonoscopy where they found out I would
need a large polyp which they said they have checked but will need to be checked deeper for cancer and will need to be removed

I got a date within 4 weeks for the operation and I was under general anaesthetic for the procedure.

I was kept overnight and sent home next day all was well
but I kept feeling weak and tired I was told to take paracetamol which I did but I felt kinda run down.
so 5 days later I went back to hospital and they ran some tests then a CT scan

What they told me was there was a small hole from where the polyp was removed and it's sealed up but it's leaked all the gunk into your outer bowel

Your OK as if the hole was still there then you would have suffered vomiting not being able to eat so that's fine

But Dr's are saying

If we can't get rid of the leaked puss and gunk with antibiotics then we will need to remove your bowel and if the polyp shows any cancer then we need to remove your bowel

Is that right I mean my stools ate OK my fevers gone I've got antibiotic drips and I'm able to walk about

So today 2 things determine if I have my bowel removed

The results from polyp and another CT scan later to see if the gas (puss) as gone down

Any help advice appreciated

Male 47
non drinker smoker
bmi 20
(UK)

Post Edited (zack36) : 8/20/2018 5:11:57 AM (GMT-6)

Many thanks for the response

The acual hole has repaired itself...as I feel a lot better not tired and low on energy as before.
It's the stuff that's come out that they are trying to kill with antibiotics. ..

Also the j pouch if it's not successful after 5 yrs your stuck with the back for life.

I mean I feel so much better than before I'm waiting for Dr's to say I'm fine as they took my bloods earlier
I'm hoping

Been living with UC for 14 yrs

Post Edited (zack36) : 8/20/2018 7:37:59 AM (GMT-6)

It seems like all of this is bad information.

I especially don't understand the part about "if the pouch isn't successful after 5 years..."

How would it take 5 years to know if it's successful?
What happens after 5 years that forces you to get a bag?
Why 5 years?
Why no option for a revision?

I would think most people wouldn't make it 5 years with an unsuccessful j-pouch.

Are you seeing a colorectal surgeon?
Do you have UC? This is a group for people with ulcerative colitis... Most never have surgery.

Failures of j-pouches are extremely rare.

Hi

The perforation occured due to a large polyp but has now sealed the Dr did a CT scan and found a large layer of gas that had leaked earlier. They are trying to get rid of all that gunk or puss with antibiotics drips. I'm feeling a lots less tired and more energetic than before.

What they are saying is that if we can't control the leaked gas fluids whatever they call it Then....the only option is the removal of the bowel.

The biopsy report comes in tomorrow if there is or not any cancer.

But can they remove the bowel just because of the leaked gas.

I've had UC for 14 years was in a flare for the past 5 months, but I've moved from Scotland to the East Midlands (UK) NHS and here because they found a large polyp they thinking ahead and want me to have the bowel removed, was supposed to be starting azoprothine (immunity drug) but they don't want to listen

Should I go private me and my sister have the monies for that

I've got a small pain on my stomach and am worried that the antibiotics might not work. ..what can I do if this happens 😢

I think I would get a 2nd opinion on this. If you have a perforation they can do a resection. I say this based on what you have written here. My brother had a perforation & they removed 18 inches of his colon. Like you, he had a lot of infection that spilled out. They cleaned up as much as they could at the time of surgery. He had a rather large incision that was left open to heal from the inside out. They packed it daily & in time he did heal up.

Unless it was an absolute life or death decision, I would opt for a 2nd opinion before agreeing to surgery. It does not sound like you are being given a lot of information about other options for treatment.

Has anyone heard bowel perforation healing itself
they are doing a wait and see with me and I'm on antibiotics I feel better but I'm worried in future in might open up again...can it

zack36 said...
Hi

... What they are saying is that if we can't control the leaked gas fluids whatever they call it Then....the only option is the removal of the bowel. ...

The problem is that part of what you are saying is incomplete or makes no sense.

ABX do not actually remove waste material from the gut. Over time, your body has to adsorb that stuff. What ABS does is kill bacteria/infection in that stuff and in the surrounding tissue.

They may be telling you that if the waste material causes infection in the adjacent portions of the colon, or more generally in other organs via sepsis, that removing some or all of the colon may be necessary.

But because it makes no sense as you state things above, it is hard to comment. You need more understanding of what effect of ABX not working would require colectomy, and why complete and not partial resection. IF you get answers to those questions, you might find more on-point responses here.

The other issue is that you have misconceptions about j-pouch and j-pouch surgery recommendation. This seems dominated by concerns about a bag.

The question of whether your perforation could open up again is "not likely once healed". In fact the scar tissue might be stronger than the surrounding tissue.

So, get more info. Get things sorted. Let us know. When there is gunk in the abdominal cavity outside the colon, the only option is not to remove the colon. IF you are hearing that you need to get an understanding of why. My thought is that you are hearing wrong, or leaving somethign out. IF the gunk causes further damage to the colon, especially portions of dead tissue, then the need for resection make sense, but you need to understand why they are saying the whole colon.

IF you do need the whole colon removed, then (and only then) should you turn to issues of number of steps, and chanced of ultimate pouch failure.

I hope this helps you get organized info

Post Edited (DBwithUC) : 8/21/2018 2:07:48 PM (GMT-6)

Could you include more of the report (while covering up any personally identifying information)?

I see cobblestoning, deep ulcerations, fissures, and it looks like there is a lot going on some of which sounds a bit Crohn's-ish...

I do agree that you have a lot to learn, many questions to ask your doctor, to better understand what is going on and why they are making the recommendation they are. You are afraid and do not understand why. If you understand why then that helps quell the fears. Fear is usually directly caused by lack of understanding in a given situation...

Anal involvement isnt with UC.....but can be with Crohn's, and yours has stricture probably from continued inflammation.

Where was the polyp that was removed?

Great advice from the others. Hang tough, and I suggest you make a list of questions to get the complete picture and clear answers.

Good you're starting to feel better.

q

Well good news

I got my results back..all was good apart from some inflammation I'm OK my bloods,blood pressure, breathing and urine all OK.

I'm so happy this is gonna be a new chapter in my life no more bad eating and soda pop just fresh healthy food.

The gonna start me on Imuran soon so hopefully fingers crossed

Just want to thank everyone here for their wonder support and help and I want to thanknow god all those prying over the past 5 days has helped

My only doubt now is the self healed bowel perforation

Is it really true it will hold up can I dance jump run in about 2 months time and not worry about it blasting open

What happens if imuron does ease my colitis right down and the hole reappears can they close the hole then or will my entire bowel need to come out.

I'm happy as well as a little worried still.

That sounds great. I am happy for you. I still don't think it's a bad idea to get private insurance, and look for some answers. Your diagnosis sounds like it's up in the air at this point. It would be good to know exactly what you're dealing with. Happy to hear you're getting out of there. Healthy food is not likely to do much for your condition, but it is good for your health overall.

Hi

This is my discharge notice review

[url] https://pasteboard.co/HAD7epA.jpg

[/urlhttps://pasteboard.co/HAD9vvc.jpg

There something I want to tell you all.....

The bit about the eye...

I was put on imuran in 2014 and it's worked amazing and I was leading a normal life . But in 2006 I had contacted shingles from kiss a female friend (just on the lips) for about 4 secs. She had a coldsore on her lip which I didn't notice? Hence I got shingles a week later.

The acual HSV1 virus hides in my spinal cord as was attacking my right eye occasionally but it's was managed with drops and sometimes I was given Aciclovir tables although they never agreed with my UC.

Anyway all was well

In early 2016 my right eye was starting to hurt and I didn't get the chance to get any med for my eye and I wasn't that aware the imuran was such immune suppression drug the HSV1 went rampent and attacked my right eye androps left severe deep scaring like litter small white patches corneal scarring.

I became really scared and immediately went off imuran fearing for my sight.

My UC came back in Dec 2016 but has been manageable I've taken asacol and it didn't bother me.

In Sept 2017 I moved to east Midlands from Scotland and my condition did worse slightly but I was never in horrendous pain or had much blood or mucus and I kinda moulded my lifestyle around it I've used salafak, asacol and prednisone enemea and I've taken asacol but I always stayed away from much steroids only been prescibed oral steroids in June.

I wanted to start imuran again because I thought my eye is OK now and now I know if in future I did get a rampant attack I will always have a supply of Aciclovir on me.

So went to see a new Dr in my new home town.

He wanted to do a sigoscomy first and check how I am.

That's the first postboard link from a few days ago was that report.
then they called me in and said they found a large polyp and need to remove it under general anaesthetic

And that's how I ended up with a perforated bowel and I am today.

Now I'm home thankin everyone on heelingwell for their advice and god.

I feel good my bowel are good now blood just a tiny bit of mucus I've eaten rice and fish last night and I haven't been to loo yet drank some ginger tea lots of water had a good night's sleep passed wind I'm in no pain and I'm able.

But I feel this Dr just wants to remove my colon just because I've had UC for 14 years I know I've learned my lesson now and I feel I've been given a second chance.

I'm back on 2.4g of asacol per day nothing for my UC

I've got about 5 boxes of Imuran still left from 2016 they don't expire till mid 2019 was hoping to start them again but the Dr saying wait for the next clinical appointment to discuss the next step

Should I go private (Bupa, The Spire, Nuffield) even though here in the UK private hospitals will not cover a illness that I've already had especially for 14 yrs I will have to pay as I go cash.

I just feel that this Dr gonna talk about getting my colon out again probably.

Thank you all...any advice help greatly appreciated