The end is in sight!

I had a stoma after my colon was removed. But suffering affer the reconnection with proctitis...

Relief! is the word that springs to mind! looking forward to it.

Thanks!

No need to apologise, its my decison and I drove it through!

The drugs aren't putting it into remission been on all sorts  and recently tried Infliximab and been on 30mg of Prednisolone, and pentasa and is not touched the proctitis! 15, 18, 20 BW a day, at times not making it to the toilet in time...so not been able go out with the kids, not been able to do much at all! (luckily I work from home otherwise that would have had to stop also!).

Theres only one final drug we can try, stronger immo suppresant, which will be tried while waiting for the op, assuming theres time, if not the on the slab for the op.

I dont really want to be stuffing drugs down my throat for the rest of my life to try and contain it... if its gone the life begins again and no more strong meds that may be doing other damage...

To be its the release for prison to begin life again...had a stoma before for 18 months so been there got the t-shirt, plus my heads in a better place than the first time.

Bring it on...can't wait and would get it done tomorrow...thats how tough life has been recently.

John

 

I feel your pain Jon I was on all those meds before I had my colon removed do you mind me asking if they put you on all the same meds too before you had your colon removed?

Hi John, I understand why you want rid of the disease.

My son had his rectum removed only leaving the muscles so that he can control the output. The diseased tissue was removed as still able to get UC, pouch attached low down but leaving sphincter for control. Why is that not possible for you ?  Sorry if too personal.

Sheila

 

Hi, 

I didnt have a chance for any meds to start with. I was ill for a few days and my wife took my to see an out of hours gp at the hospital on a sat morning, they kept me in and done some tests and told me I had UC...never heard of it and it came out the blue!

Had more than a week in hospital, on steriods and other drugs and was due to get home the weds 10 days after I was admitted. My temp spiked that night and I was blue lighted over to a larger hospital for a 5 hr emergency op to remove my entire colon so woke it a stoma. No time to prepare or anything so my head wasn't in the right place and I struggled with it.

Had the reversal 18mths later in 2011 and all was ok for the first couple of years, managed a walk up and down Ben Nevis with no need for a toilet trip so things were ok...

Then I started to suffer flare ups of proctitis in the rectal stump, so thats when the meds started. mesalamine, and small doses of steriods were doing the trick...but the flare ups become more regular and I needed higher doses to knock it down.

The last 18 months have been bad and really for the last 8 or 9 months I've been on high doses of both and theyve not been having any effect, so started infliximab in Nov 2015 and 4 infusions later and 30mg of steriods and its done bugger all.

So it was time to call it a day and get rid of the problem part...get the stoma back and get the life back. 

Being able to do some exercise, running cycling and anything else is a possibility for me, where as it was remotely feasable they way things were at the moment. I'm 41 with a 6 and 3yo boys so can get out to the park and places with them. Do dad things in essence!!!

And to top it off I don't need to be filled with strong meds.

My head is in a better place for the stoma and although not the best thing to have in life, its better than what I have at the moment! Actually looking forward to it!

Regards,

John

Sounds bad. My son had his J pouch take down in July and is doing well and we have been told he won't get any disease again, still think this is correct.

Sheila.

 

nothings too personal on here, we are all here to help the others.

It may be suggested by the surgeon when I meet with him on Friday, but I've suffered long enough and want it put to bed once and for all. I don't want 2 operations where it still may not work and still need to end up with a stoma.

That may sound a little defeatest, but its affected my life and prospects enough as it is and I want to get on.

My anus is raw with the number of times I need to go. With a j pouch it may reduce it to 6-8 BM a day, but plenty still suffer from well into double figures. I'm tired of feeling the need to go all the time the urgency may still be there. Its very biley at the moment which doesnt help, but the burning is terrible. The biley stools may be due to the meds I'm on.

With the stoma, there may be an occasional leak, which to me is less embarrassing than leakage the "normal" way. Plus I'd be in control! Fair enough the bag will need emptying, but this can be done on my terms.

I work from home, but have some travel so being in control of when its emptied would be a huge relief! no need to worry about being stuck in traffic...You may have read in other posts of mine, but I turned down a dream job, with a 6 figure salary as it involved european travel, something that wasnt possible due to my toilet trips, but may have been with a stoma.

So for me its a personal decision, Ive been through enough and just want an end to it all. I know a j pouch can always be reversed, but I cant take no more, suffered enough. Thats why for me its a stoma, so its done and dusted. I'm back in full control!

Regards,

John

Understood. Hope you find release from the pain. I  know my son hated the meds almost more than anything.

Ok still have questions, they presumably will be going in through scar and reforming stoma and bringing out to abdomen, wont they be removing rectum too in one go.

What is weird is that my son has no idea that I share his stuff on here, but then what he doesn't know wont hurt him. When he was in hospital for 50 days over 4 occasions, I sat with him and did all sorts of helpful things! so he owes me!

Sheila

Wow sounds like you have been through it I had my flare for 9 months running to the loo 10-20 times per day while pregnant then with my baby it was supposed to be the most amazing time of my life still was the hardest by sept 2015 I couldn't cope none of the drugs were working. It must of been really hard waking up with a stoma mentally it's a very tough challenge I had a week to prepare which helped a lot but it was tough when it happened hardest thing ever !! Jon your life will be so much better for you once you are rid of the proctitius 🙏 Then you can really enjoy your family like you should be... Life with a stoma isn't bad maybe not ideal but life is more important and that you are able to live it!

I will be due for j pouch in March but I gonna hold off as my surgeon advised to finish with babies till then ..as it affects women's fertility by 30% then I will see where I'm at after, he also advised that there is always that risk of proctitius 5% and that j pouches can last months or years just depends on the person and that there will be that possibility of a permanent stoma in later life .. I have a friend who is in her 70s back in her 30s she did what we are all doing operations , stoma , reversal then ended up ill and had a permanent one for 23 years now and lives a very happy life! so without being all doom and gloom its best to face reality head on nothing lasts forever just got to be grateful of what we got stoma or j pouch and so on..

If you want any tips about the stoma and bag just let me know be happy to share 👍😊 my friends have been down the same road and little tips I have found make my life so much easier with the stoma.

Jon where are you having your operation if you don't mind me asking ?

Hi, have any of you been on Stomawise.co.uk as very useful.

I've checked again as you had me worried about your problems Jon. My son had rectum removed at first reversal op so has no disease left. I have looked on half a dozen different UK sites and they all say  the same. Why did they leave yours Jon?

Sheila

Hi, Darn I mentioned a website so they removed my post.

Just checking a few places on various UK sites, and they all say lining of rectum is removed at first reversal op, got me worried as I'm sure my son has been told he wont get any symptoms anymore. Why, Jon was yours not removed, as it sounds like you had a bad time of it?

Sheila

Hi Jonwhut. I admire your positive attitude & good luck. Just one thing hit a lightbulb with me from your last post above; have you been tested for bile acid malabsorption too? This causes burning, inflammation & soreness around rectum/anus, frequent urgent diarrea & because you mentioned the biley stools.....it is easily diagnosed with a sehcat scan & treated with meds (like me) when i had a colonoscopy about a year & half ago, my rectum/anus visibly looked to gastroenterologist like proctitis, but biopsy didnt match the visible, so got tested for bile acid malabsorption by him & positive!! just if your talking to your surgeon, maybe worth asking to be tested before the op. the fact that steroids & immune suppressants arent doing anything also points to poss bile acid malaborption symptoms. its a condition common in people with other bowel conditions but often overlooked as it mimics symptoms. the meds i take are questran sachets, & they made a huge difference within weeks to the diarrea, frequency, urgency, & constant ring of fire!! hope this helps.

Sounds interesting, not heard it mentioned before. Just shows need to keep asking questions.

Sheila

Sadly for me the bile issues only came around when I started on the Infliximab. Think it may have interfered...I've had lots of biopsies taken during the colonosconpy and it all points to the proctitis.

I will ask the surgeon and he may test it for it just to check and you never know...

Thanks for the message. Any tips more than welcome. Its the second time round with a stoma for me...permnamnet one this time...and I'd imagine that the stuff available has probably moved on a lot over the last 5/6 yrs or so since I had mine.

I just want to be able to get on with life and get out and about without the constant fear of where the nearest toilet is! Out with the kids, walking the dog, things that are normal for most people.

I live in Lincolnshire, I had my first ops in Lincoln hospital.

I'll meet my surgeon at Grantham Hospital as this is closest and the op could be either there or at Lincoln. 

I do have medical insurance through work, but can't get it through them as they class it as an exsisting condition.

Yes maybe things have changed coloplast is my product that I use which works really well and a jug of water to empty the bag works a treat it's faster and feels cleaner and no smell due to having a rinse out 😉 It really is the simple things in life you miss when not able won't be long Jon good luck 🙏

Well that makes sense to do it close to home hope all goes well.

This is what I asked the specialist, I'll also be asking the surgeon.

The specialist's reply was that it can be quite standard if everything is fine and clear. This may have changed in the last 5yrs.

It'll be interesting to see what the surgeon says when I ask him also...ill let you know what he says.

Have you looked on that site, stomawise ? It's strange but if you say all of the web address on here it sometimes get moderated and removed! Your last post confused me a bit, what is quite standard? We only have recent experience but rectum removal at j pouch creation surgery is the standard from what we were told at John Radcliffe Oxford and on the various sites. It seems sensible to take away all disease tissue.

Sheila

Hi Jon, just had a chat with my son to clarify, as after all he is the one who has had the more intimate conversations with the advisory team at JR Oxford. He says his surgeon at his local general hosp who did the ileostomy left the last few inches of colon, the rectal stump, as if the reversal op had been done there they would have joined the pouch to the top of the stump and closed up the mucous fistula. It was only a few months later when he went to JR Ox to get diagnosed as UC and not indeterminate and talk about the possibility of a pouch that they said that as a specialist hospital they would remove the stump, maintain the rectal muscle and join  the muscle wall to the pouch. So even only 2 years ago the gen hosp was not removing the last piece of colon wheras specialist hosps like St Marks London and JR Ox was. We think the reason is that there is a risk, very small, of nerve damage if they operate low down which can be more of a problem for men, my son was offered sperm storage, but declined. All works well apparently. 

So do make sure you get upto date advice and if nec go to a specialist hosp for a second opinion if not the surgery. 

My son has a facebook contact who had the ileostomy at the same time and was in the general hosp at the same time. He has not had a reversal and has the stoma but the mucous fistula and stump are the bain of his life and suffers many UC symptoms.

Sheila

Hi Shiela,

It sounds like a specialist unit will do the next step, where as mine may not have the experience for the trickery op.

For me now its gotten to the point where quality of life is the key driver. I'm 41, I have a family, so while the nerve damage and potential sexual issues are a concern I cannnot continue with the urgency and trips to the toilet. Today has been a good day for me with only 13 BM so far...last week I averaged 18 BM per day!

My stump and rectal tissue were fien initially, but it seems the symptoms have come back with a vengance...had I known what I know now then I would have been asking more questions as to why it was being left in. By hindsight is a wonderful thing. Hopefully these forums can help those still to go through it...

I will speak with the surgeon and see what he says on Friday, but for me I don't want it to drag on, I've had enough of it. The Stoma doesn't phase me, but if there is another option I may consider it.

Lets see what Friday brings...

Many thanks for all your information and I'll keep you updated.

Regards,

John