Hi Steve
Yes i’m seeing him next Tuesday so will definitely ask.
Can i ask what treatment you are on for the chronic ileitis? And if it is working well for you?
Thank you
Hi RB15,
I've been taking budesonide (Entocort) for 8 years, mostly 2x3 mg a day. It soothed inflammation, but did not resolve symptoms.
Now my main treatment is antibiotics (Cipro & Flagyl) for more than 2 years. I started with monthly intervals of about 5 days and a regular dosis of 500 mg Cipro + 400 mg Flagyl with breakfast and dinner.
During the last 8 months I had chronic daily antibiotics use with a reduced dosage after the initial phase. I take them at late evening, some hours after dinner.
I feel hardly any side effects and my digestion is much more stable.
Yet I have to watch my blood levels of the liver where two of them are often far off limits. I'm not sure if this is a side effect of antibiotics.
@SteveG posted:Hi RB15,
I've been taking budesonide (Entocort) for 8 years, mostly 2x3 mg a day. It soothed inflammation, but did not resolve symptoms.
Now my main treatment is antibiotics (Cipro & Flagyl) for more than 2 years. I started with monthly intervals of about 5 days and a regular dosis of 500 mg Cipro + 400 mg Flagyl with breakfast and dinner.
During the last 8 months I had chronic daily antibiotics use with a reduced dosage after the initial phase. I take them at late evening, some hours after dinner.
I feel hardly any side effects and my digestion is much more stable.
Yet I have to watch my blood levels of the liver where two of them are often far off limits. I'm not sure if this is a side effect of antibiotics.
Yes i thought antibiotics might be involved, my concern is i have used Cipro sporadically over the years to combat occasional SIBO and to help heal fissures, so it’s not as effective and i was getting joint pains on my last course
Flagyl i can only take for 2-3 days before i get really naseous from it, it works well but it just makes me feel awful.
So maybe there are other antibiotics that can be tried, or maybe Biologics could be an option.
So annoying when you go for 16 years without any inflammation and then it just appears and you’ve got a new diagnosis to deal with.
Thanks again
Bonjour again
Got my biopsy results today in my appointment with my surgeon.
Turns out like CTBarrister and maybe a few others here that i have unexplained inflammation, but i’m a bit of an enigma in that my pouch is completely clear, i just have 10cm of inflammation above it, then it’s clear for the next 60-70cm’s.
He ruled out Crohn’s at the moment as there was no granuloma’s or ulcers, and the inflammation is not patchy.
I understand from doing alot of reading here not to get bogged down with the name of the diagnosis which is understandable.
He said he would normally give me a blast of prednisone but i have been up and down it for the last 4 years (it was his novel approach at treating IPS abdominal pain which worked for a while) so he is wary of my bones.
He is referring me to a gastroenterologist in the same hospital to discuss biologics, so i just wanted to ask a question to those that are well versed in these medications -
Is there a stand out biologic in terms of least side effects and good efficacy?
It would be great to get a small list as he mentioned Infliximab (i believe you guys call it Remicade in the US) and in the UK they will usually throw the most cost effective treatment for them at you, regardless if there is a much better alternative.
The ones that keep popping up here are Stelara and Entyvio, but if there’s others please let me know.
My symptoms are pain and blood, but no urgency.
Im also booked for an MRI scan to check there isn’t any other areas that could be causing the blood.
It’s been quite taxing mentally for many reasons, one being the emerging realisation i have been misdiagnosed for several miserable years.
Thanks
Hi RB15, as you already said the biologic Infliximab / Remicade would usually be the first attempt.
I would wait for the result of the MRI scan (hopefully MRI Sellink for having a good contrast of the small intestine) before starting a therapy. That could reveal if there is a stricture somewhere in the ileum.
On the other hand adhesions could be an explanation for your abdominal pain. Those are difficult to diagnose without laparoscopic exploration. Do you feel a change in pain when you push your abdominal skin to one side?
I can not tell about adhesions from my own experience, I just know from this forum. But I can tell that I was having bloody stool from percussions during sports (jogging) when the end of my small intestine was inflammed.
@SteveG posted:Hi RB15, as you already said the biologic Infliximab / Remicade would usually be the first attempt.
I would wait for the result of the MRI scan (hopefully MRI Sellink for having a good contrast of the small intestine) before starting a therapy. That could reveal if there is a stricture somewhere in the ileum.
On the other hand adhesions could be an explanation for your abdominal pain. Those are difficult to diagnose without laparoscopic exploration. Do you feel a change in pain when you push your abdominal skin to one side?
I can not tell about adhesions from my own experience, I just know from this forum. But I can tell that I was having bloody stool from percussions during sports (jogging) when the end of my small intestine was inflammed.
Hi Steve
I’m not sure about adhesions as the pain is triggered after eating like in people with IBS, and i dont feel any pain or pulling when moving about, and the same with pushing the skinf around.
I’m seeing the gastro on 28th June as they want to do the MRI first, i’m considering trying Mirtazapine to help me sleep and increase my appetite as i’m also struggling with them at the moment, just worried about the drowsiness the next day.
Thanks
Hi RB15,
Did you ever discover the cause of your anemia, or get it more controlled? I've had the same thing for a couple of years now, needing infusions every few months. I do have ulceration in my pouch which could explain things but I rarely ever see blood, and have pretty normal function.
Weirdly though, I also get pain in my lower abdomen / groin area quite frequently (it only started earlier this year) . It went away for a few months and now it's come back. It can be quite painful and distracting at times. I've had ultrasounds, blood tests and all sorts but have no diagnosis yet, which makes me think it's something pouch related even though one doctor said it sounds too low down.
I'm currently going through hyperbaric treatment to see if that helps the pouch and anemia. I'm already on Entyvio which seems to help a bit.
@R227 posted:Hi RB15,
Did you ever discover the cause of your anemia, or get it more controlled? I've had the same thing for a couple of years now, needing infusions every few months. I do have ulceration in my pouch which could explain things but I rarely ever see blood, and have pretty normal function.
Weirdly though, I also get pain in my lower abdomen / groin area quite frequently (it only started earlier this year) . It went away for a few months and now it's come back. It can be quite painful and distracting at times. I've had ultrasounds, blood tests and all sorts but have no diagnosis yet, which makes me think it's something pouch related even though one doctor said it sounds too low down.
I'm currently going through hyperbaric treatment to see if that helps the pouch and anemia. I'm already on Entyvio which seems to help a bit.
Hi R227, sorry for the delay in replying, i missed the email notification.
So since that post i got diagnosed with Crohn’s disease unfortunately, so i guess that could certainly be a factor to the anemia as i was losing blood too.
However, i have been on Stelara now for 8 months and it is working well to the point that i bleed seldomly now, but still have the same rate of anemia.
Which leaves me to believe that maybe it has been an absorption issue all along, maybe due to the Crohn’s or the vague reasoning that everyone with a pouch gets told by their GI that “it can just happen”
It’s very frustrating for me, i’m exhausted as im typing this and i only had my infusion 3 weeks ago and due another next week.
It would be great if it’s been the Crohn’s all along and god willing it will just take more healing time to get my anemia under control.
If that doesn’t happen then i’m going to go on a mission to find out why the hell us pouchies just randomly stop absorbing iron out of the blue, as i had a 12 year pouch run with no anemia.
Thank you
Thanks for getting back to me RB15, much appreciated.
Sorry to hear you're still experiencing anaemia issues, I'm sure it's really exhausting constantly having to have infusions like that. Especially if you're not feeling much benefit from them. I hope your anaemia improves, and that the crohns gets under control too.
My anaemia has improved in the last four months - but the only thing different is that I completely gave up alcohol. I can't think of anything else that's changed in that time, so that seems to make sense that it could have been making my pouch ulcers worse (and increasing bleeding) - though I'm not suggesting everyone would have the same issues with alcohol.
You're right though, it just seems accepted that some of us get anaemia. There definitely needs to be more research into it.
Thanks,
Richard