Never ending bleeding?

Was first diagnosed with IBD about 2 years ago (after 1st sigmoidoscopy they weren't sure exactly what) was put on 400mg asacol tablets. 6 a day for a while and then 3 a day. It seemed to work for a while, although there was usually always streaks of blood on the stool.

Then i was noticing more blood than usual and constipation so had a colonoscopy and was diagnosed with proctitis. Taking 1 asacol 50mg suppository a day, it seemed to do the trick. Little or no blood at all for a long time - but had abnormally large bowel movements a lot.

Then symptoms changed a lot. Instead of blood streaks on stool, blood was pouring out on its own. Sometimes go to the toilet and nothing comes out but blood. Having over 5 bowel movements a day - I was told to use a foam enema steroid. It's meant to work pretty much straight away but nothing was changing. I then started on a course of prednisolone steroids, but still the symptoms wouldn't change. Bloody diarrhoea, pool of blood, very thin poo, sudden urges to go, bowel noises and black liquid stuff.

Had another colonoscopy and this time it's a diagnosis of ulcerative colitis. They say it has spread. They have put me on 800mg octasa tablets (6 a day). Been taking them 4 days and nothing has changed.

Why is nothing working? Not even steroids? I remember after my second colonoscopy, the specialist told me that the asacol tablets were 'going straight through me'. Could this Be a reason? Maybe I'm not processing food or tablets properly? I've lost a lot of weight. I am 5ft 11 and only weigh 65kg (10.5 stone).

IBD nurse said if these tablets don't work then the last option is AZA?

I tend to just eat normally (like before I had the disease). She's told me to eat soup and things like homemade shepherds pie. But i can't even cook! I can't just live off soup?

Sorry for so much info but I'm just really worried about it all and just get the impression that the IBD nurse has given me too many tablets to take. I'm worried about my liver etc, especially as they don't seem to do anything.

Thank and if anyone has any advice I would appreciate it

You're taking the normal amount of tablets for Asacol. Asacol tabs can contribute to the diarrhea as well. When my flares were bad they were no good as I couldn't process them either. Since your inflammation has spread it's likely you're past mild stage and at moderate disease. You're gonna have to go on azathioprine and maybe a biologic if you can't get it under control soon. Ideally it would be best to go on IV steroids while hospitalized to get this under control. Unfortunately most GIs Woll wait until you can barely function for that and then they will lecture you for not coming to them sooner.

gdl900 said...
Thank you for the responses. I will mention c diff At my next appointment.

I think I'm likely to be on azathioprine soon, but from what I understand it's really not good for you? Similar to steroids?

I understand it isn't the end of the world having this disease, and it could be worse. But it really is demoralising how nothing seems to stop it or make it better at all.

It's good that this forum can help connect with other sufferers though And I will definitely start posting on here more and trying to give any advice or seek advice more. Thanks

Hi gdl ,

You seem to have the opposite of me , when I was first dxd I was passing lots of blood and I mean just blood , I now have streaks along my stool and nothing coming out of me , could just be a case that the tablets are fighting the inflammation in different places

I think now that my inflammation is further up than previously , meaning the blood is more on the stool than passing out of me fresh.

If that makes sense ?

What medication do you take now bulmanboi?

gdl900 said...
Thank you for the responses. I will mention c diff At my next appointment.

I think I'm likely to be on azathioprine soon, but from what I understand it's really not good for you? Similar to steroids?

I understand it isn't the end of the world having this disease, and it could be worse. But it really is demoralising how nothing seems to stop it or make it better at all.

It's good that this forum can help connect with other sufferers though And I will definitely start posting on here more and trying to give any advice or seek advice more. Thanks

I was diagnosed with poctitis for the first few years but my last 3 flares were pancolitis and they were long and messy and I suffered a lot. I eventually went through all of my options, and I needed to have the jpouch surgery, In the meantime the drugs damaged my body and I wish I didn't fight all those years to keep my colon. It could be a good thing that you have a severe form of UC. If you have surgery before your body gets damaged by the meds you'll walk away from this likely much better.

Bulmanboi123 said...

RISEagainst said...

gdl900 said...
Thank you for the responses. I will mention c diff At my next appointment.

I think I'm likely to be on azathioprine soon, but from what I understand it's really not good for you? Similar to steroids?

I understand it isn't the end of the world having this disease, and it could be worse. But it really is demoralising how nothing seems to stop it or make it better at all.

It's good that this forum can help connect with other sufferers though And I will definitely start posting on here more and trying to give any advice or seek advice more. Thanks

I was diagnosed with poctitis for the first few years but my last 3 flares were pancolitis and they were long and messy and I suffered a lot. I eventually went through all of my options, and I needed to have the jpouch surgery, In the meantime the drugs damaged my body and I wish I didn't fight all those years to keep my colon. It could be a good thing that you have a severe form of UC. If you have surgery before your body gets damaged by the meds you'll walk away from this likely much better.

How did you know the difference in the last 3 flares ? Symptom wise ?

Everything was just worse. It was like a flare on steroids (the other kind of steroids lol)

Most definitely get a stool test to rule out C Diff, as not getting a response to steroids raises the pathogenic possibility as a red flag.

You may not respond to pred if you do not have a strong enough dosage, you didn;t say what you were given. 40mgs of pred often is a good starting dosage, sometimes up to 60mgs a day is given orally. Anything above that is given as IV steroids under nurse supervision as a hospital in-patient procedure.

UC does have the pesky habit of getting more severe and spreading to affect more and more of our large intestine over time. It is possible that your UC has just progressed beyond what your other medications could handle. You could need biologics like remicade/humira. Certainly, you'd want a colonoscopy or at least a sigmoidoscopy before going up a class of UC meds, but it might be a good thing to do if it just doesn't make sense: get a scope and biopsies and see exactly what the heck is going on up there.

iPoop said...
Most definitely get a stool test to rule out C Diff, as not getting a response to steroids raises the pathogenic possibility as a red flag.

You may not respond to pred if you do not have a strong enough dosage, you didn;t say what you were given. 40mgs of pred often is a good starting dosage, sometimes up to 60mgs a day is given orally. Anything above that is given as IV steroids under nurse supervision as a hospital in-patient procedure.

UC does have the pesky habit of getting more severe and spreading to affect more and more of our large intestine over time. It is possible that your UC has just progressed beyond what your other medications could handle. You could need biologics like remicade/humira. Certainly, you'd want a colonoscopy or at least a sigmoidoscopy before going up a class of UC meds, but it might be a good thing to do if it just doesn't make sense: get a scope and biopsies and see exactly what the heck is going on up there.

Was 30mg starting dosage. I had a colonoscopy end of august, it came back as Mildly to moderately active, rectum to sigmoid and a patch in caecum. The fact it's mild makes it even more bizarre how the bleeding just won't stop. I'm going to the toilet maximum twice a day at moment, but blood Is always there. And there is a really bad fishy smell too.

Having just Done a bit of research on the caecum patch, it seems this is common for people with proctitis? Because the rest of inflammation is rectum to sigmoid. Would that be colitis or proctitis? Hmm so confusing

Post Edited (gdl900) : 9/18/2017 3:36:28 PM (GMT-6)

A caecum patch isn't typical of UC, more common with Crohn's-colitis, indeterminate-colitis, or crohn's disease.

Im having exact same problem!!
Just non stop bleeding... so frustrating

"Rectal 5-ASA (suppositories, enemas) and rectal steroids (enemas, foams) are effective treatment for ulcerative proctitis. Rectal 5-ASA has demonstrated increased efficacy compared with rectal steroids and oral 5-ASA and is therefore the first-line treatment."

"Oral 5-ASA, 5-ASA suppositories and enemas are all effective in maintaining remission in patients with ulcerative proctitis. No trials have directly compared the effectiveness of suppositories versus enemas for maintenance. While most reports have not found a dose response for rectal 5-ASA, D'Albasio et al reported a 1-year remission rate of 90% versus 68% for 500-mg ASA suppositories given b.i.d. versus daily, respectively.44 Daily dosing is not always required as was shown by Marteau et al, who found 1-g slow-release 5-ASA suppositories are effective at preventing relapse when given three times per week.45 Rectal 5-ASA is as effective as oral 5-ASA in maintenance of remission, although one randomized trial demonstrated higher 1-year remission rates in patients treated with combined oral/rectal therapy compared with oral therapy alone (61% vs 31%).46"

/www.ncbi.nlm.nih.gov/pmc/articles/PMC2780078/

gdl900:

Your history sounds a bit like mine. Started with proctitis, then mild UC. Asacol tablets seemed to control it for a couple of years. Then my symptoms got steadily worse. I played pharmaceutical roulette for several years while my UC progressed to moderately severe and impacted my general health. Seemed like nothing I tried worked: azathioprine, more azathioprine, even more azathioprine, Prednisone, Rowasa, Remicade, Humira, 20 different herbs and spices, various odd diets, probiotics, prebiotics.

But just because nothing has worked yet, doesn't mean nothing will work. I eventually got better with Entyvio, hydrocortisone enemas, still Asacol, curcuumin, IBD-AID diet, and avoiding food additives (carrageenan, emulsifiers, gums, etc).

It can take a long time to find out what works individually. If 5-ASA and steroids aren't doing it, it might be time for biologics.