Crohns / ulcerative colitis sufferers

MOOGLEYS · 18 Feb 2019 at 15:01

Just been told my kidney function is borderline so need to stop taking the Asacol mesalasine tablets. Was never convinced they were doing me any good tbh.....

My infliximab has all been sorted and will be my only treatment. Hopefully be starting it tomorrow.

Steroids have taken away the pain and cramping so far but still have loose and urgent trips to the loo. The consultant doesn’t want me on them to long and will fade them out once the infliximab starts.

All good fun...

DanTheMan · 18 Feb 2019 at 19:17

MOOGLEYS said:
Just been told my kidney function is borderline so need to stop taking the Asacol mesalasine tablets. Was never convinced they were doing me any good tbh.....

My infliximab has all been sorted and will be my only treatment. Hopefully be starting it tomorrow.

Steroids have taken away the pain and cramping so far but still have loose and urgent trips to the loo. The consultant doesn’t want me on them to long and will fade them out once the infliximab starts.

All good fun...

I hope coming off mesalazine helps you. I was convinced it made me worse when I was on it regularly. The few times I've tried it again over the past 8 years, I instantly get cramps and diarrhea.

MOOGLEYS · 18 Feb 2019 at 19:25

DanTheMan said:
I hope coming off mesalazine helps you. I was convinced it made me worse when I was on it regularly. The few times I've tried it again over the past 8 years, I instantly get cramps and diarrhea.

Tbh mate I feel the same. Never been convinced they have done me any good. Will be interesting to see what happens now I have stopped them. Been taking them for 11 years....

MOOGLEYS · 19 Feb 2019 at 11:02

Just about to start my first infliximab. I’m nervous and excited all at once....

dowie · 19 Feb 2019 at 11:03

Good luck, hope it works out for you

Had tried both Pentasa and Asacol and neither did much for me btw... was originally prescribed them by a general gastro consultant when it wasn't too clear what was going on - mine is mostly small bowel and so the endoscopy was clear (visually) and only showed stuff on the biopsies - wasn't till an MRI showing a load of strictures in the small bowel that I got a proper diagnosis and sent to a Crohn's specialist who immediately took me off the mesalazine/Asacol ("useless stuff" was his comment!) and started down the path of trying a few things before getting onto the biologics (in my case humira).

MOOGLEYS · 19 Feb 2019 at 19:29

Infliximap did not go to well with me unfortunately. About half way through I started to feel lightheaded, dizzy and sick. Had to stop the infusion and now have a cracking migraine.

Bit of a bugger really was hoping it would be the one but it looks like I can not tolerate it.

Thinking it’s time to just getting on with surgery...

LeMson · 19 Feb 2019 at 21:58

You tired methotrexate Moogleys?

dowie · 19 Feb 2019 at 22:08

Sorry to hear that, was that the last treatment option they are going to try? It is Crohn's or UC you've got? If Crohn's it seems like some consultants are trying people on anti-MAP antibiotics too, there is a MAP vaccine in development at the moment which might be a possible treatment if the trials go well.

MOOGLEYS · 19 Feb 2019 at 22:17

LeMson said:
You tired methotrexate Moogleys?

No mate not heard of that one tbh.

MOOGLEYS · 19 Feb 2019 at 22:21

dowie said:
Sorry to hear that, was that the last treatment option they are going to try? It is Crohn's or UC you've got? If Crohn's it seems like some consultants are trying people on anti-MAP antibiotics too, there is a MAP vaccine in development at the moment which might be a possible treatment if the trials go well.

I’m not sure I need to speak to the ibd team again tomorrow as it was the ward staff that did the infusion.

I have U/C.

TBH I have no issues having a bag and to me it just gets the job done and I can get on. I’m not sure if I really want to try more drugs but I’m probably feeling on a downer after today’s experience. I was really hoping it would be the one but I suppose not all drugs are suitable for everyone. I have a cracking headache still hope it does not last for weeks...

dowie · 19 Feb 2019 at 22:22

MOOGLEYS said:
No mate not heard of that one tbh.

think it is what some people get started on instead of azathioprine or mercaptopurine

presumably they tried the aza first - others things they seem to try if those fail are low dose mercaptopirine + allopurinol then thioguanine

or that might not be applicable for UC

MOOGLEYS said:
I’m not sure I need to speak to the ibd team again tomorrow as it was the ward staff that did the infusion.

I have U/C.

Ah ok, the MAP stuff perhaps isn't relevant then, UC is AFAIK an autoimmune condition whereas the idea behind the MAP vaccine/treatments is that Crohn's isn't..

LeMson · 19 Feb 2019 at 22:30

Yeah azathioprine gave me kidney pain for most hours per day, so doc's tried methotrexate and it worked wonders, dose was 12x2.5mg, little tablets you take once a week, you'll need a rest day after taking them as they are quite strong, I have pancolitis, ask the doc's though, surgery scares the hell out of me

MOOGLEYS · 20 Feb 2019 at 16:27

Just had a camera and I’m showing very inflamed with a small inflammatory polyp where my bowl is trying to heal. Tbh it looked a right mess in there. It looks like a chat with the surgeons is next on the list as the high does steroids don’t seem to be doing much for the inflammation.

Might be having surgery sooner than was expected.

MOOGLEYS · 24 Feb 2019 at 09:27

I’m back home now awaiting a referral to the surgeons. I’m on oral Pred which is just about keeping it bearable. They said I would get a faster appointment to see them and if it all goes mental in the meantime I will be back in hospital.

I had a chat with the surgeons in hospital and they were happy to look at surgery as I did not have much luck with biologic treatments and my Kidneys have taken a hammering too.

Hopefully they don’t take too long....

MOOGLEYS · 7 Mar 2019 at 15:34

Lasted 2 weeks now back in hospital again. Looking like surgery is going to be looked at now sooner. The oral pred has pretty much bummed out at 30mg and I’m back to bleeding and going more.

Just want to get on with it now tbh.

chipperhead · 7 Mar 2019 at 15:37

Sorry MOOGLEYS I haven't been keeping up with the thread, what surgery are they they discussing?

MOOGLEYS · 7 Mar 2019 at 15:42

chipperhead said:
Sorry MOOGLEYS I haven't been keeping up with the thread, what surgery are they they discussing?

Remove my colon and fit ostomy. I need to see the surgeons for a decision. Just being processed through the AMU at moment so I imagine I will be here a while.

If they decide to operate pronto I will be in a week or so.

chipperhead · 7 Mar 2019 at 16:41

MOOGLEYS said:
Remove my colon and fit ostomy. I need to see the surgeons for a decision. Just being processed through the AMU at moment so I imagine I will be here a while.

If they decide to operate pronto I will be in a week or so.

Is a J Pouch not an option for you?

MOOGLEYS · 7 Mar 2019 at 16:46

chipperhead said:
Is a J Pouch not an option for you?

Not really sure mate tbh. Need to see the surgeons and see what they say. I think they will do an ostomy at first due to the inflammation.

Hodders · 7 Mar 2019 at 18:40

Read this thread as my dad suffered from these issues. Plus as he got older he developed diverticulitis just to add to his issues.

He did a load of research just before he died (not related to his bowel issues) and was reading about fecal transplant and deliberate infestation with certain types of parasitic worms. The theory being that we evolved to have a wider range of parasitic challenge and are now so clean that our immune systems sometimes get too keen looking for something to attack that just isn't there.

Paleo diets will also encourage a healthier gut fauna - something that fecal transplants can also do.

Have any of you looked at the same stuff my dad did?