Appointment with the surgeon coming shortly to get booked in to get my rectum removed and thus get rid of the proctitis! I already had by entire colon removed! Having a flare up the steroids, Infliximab and many other drugs weren't even touching!
Getting the stoma back...but way more important than that is I'll get my life back!!!
No more uber urgent trips to the toilet...not more 15+ movements a day and no more ring of fire!
I'll be back in control.... 👍
Good luck.
Hi John, good luck indeed. Can I ask why you didn't have the stump removed at the reversal, is it just different surgeons do different operations. Are you happy with your surgeon, will it effect the pouch?
Sheila.
That's great to hear Jon I know the feeling when nothing is working with the meds and the toilet trips take over your life having a stoma is like a friend as it gives you your life back!!
Imagine you will be able to sleep that I missed so much I wish you all the best and lots for luck and a speedy recovery for the op keep us posted!
👍👍😉👌
Sorry John, just re read and you are having stoma again. Sorry to hear. Don't really understand though.
Sheila.
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 ...yes ur life will b ultimately more pleasant ...I have ileostomy from May 2015 after 26 yrs of uc and what a difference it has made to my life ..the small inconvenience of bag is nothing compared to life with uc. U will not know urself. Good luck for the surgery MJ
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