Hi RB15,

Humira is the original trademark, Adalimumab the general name of the agent. I was treated with a generic called Hyrimoz some time ago, which did not help my chronic inflammation. But there were hardly any side effects, so you should not worry too much.

Were you already treated with Remicade / Infliximab? That is a more common first treatment with biologicals. There is less danger of developping antibodies with that med.

@SteveG posted:

Hi RB15,

Humira is the original trademark, Adalimumab the general name of the agent. I was treated with a generic called Hyrimoz some time ago, which did not help my chronic inflammation. But there were hardly any side effects, so you should not worry too much.

Were you already treated with Remicade / Infliximab? That is a more common first treatment with biologicals. There is less danger of developping antibodies with that med.

Hi Steve

Yes i did mention Infliximab and he said that Adalimumab has overtaken it in the UK for the first line treatment as it’s newer and has a better general side effect profile.

I imagine Infliximab would still be in the locker though in the future.

I like the thought that Humira is a self injection, it’s just that i’m a bit of a hypochondriac (not good when you have a genuine illness) and i’m constantly checking my moles abd also checking for lumps in my armpits.

After a bit more research the cancer risk seems to be greater if you are combinging therapies e.g. Humira and Imuran etc.

It’s a bit if a shock all of a sudden dealing with a new diagnosis after 16 years, but i’m not gonna get bogged down and moan about it, i just need to get on and try find a treatment that gives me a good quality of life.

Thanks

@RB15 posted:

Hi Steve

Yes i did mention Infliximab and he said that Adalimumab has overtaken it in the UK for the first line treatment as it’s newer and has a better general side effect profile

It's not clear if you are making this statement in regards to Crohn's generally or J Pouch inflammation generally regardless of characterization, but this statement is not true in regards to the state of modern science in the USA. I have been told consistently for over 20 years that there are more clinical trials showing the efficacy of Remicade in treating J Pouch inflammation than there is on any other biologic. The medical profession in UK might have a different view or the statement might just apply to Crohn's generally, but the statement above would not be true according to 3 J pouch experts I have had in regards to J Pouch inflammation regardless of fictional labels like Crohn's. This is especially true since the recent science in the USA is that chronic inflammation in J Pouches appearing after surgery is NOT Crohn's at all, but an unknown and unclassified new IBD. Which all proves that the labels for bowel inflammation are all nonsense and we should just call it bowel inflammation and focus on the location and pattern of the inflammation. From an analytical perspective what's important is where in the bowels the inflammation is, and not what artificial and dated label you slap on it, and most modern J Pouch experts have concluded as much.

@CTBarrister posted:

It's not clear if you are making this statement in regards to Crohn's generally or J Pouch inflammation generally regardless of characterization, but this statement is not true in regards to the state of modern science in the USA. I have been told consistently for over 20 years that there are more clinical trials showing the efficacy of Remicade in treating J Pouch inflammation than there is on any other biologic. The medical profession in UK might have a different view or the statement might just apply to Crohn's generally, but the statement above would not be true according to 3 J pouch experts I have had in regards to J Pouch inflammation regardless of fictional labels like Crohn's. This is especially true since the recent science in the USA is that chronic inflammation in J Pouches appearing after surgery is NOT Crohn's at all, but an unknown and unclassified new IBD. Which all proves that the labels for bowel inflammation are all nonsense and we should just call it bowel inflammation and focus on the location and pattern of the inflammation. From an analytical perspective what's important is where in the bowels the inflammation is, and not what artificial and dated label you slap on it, and most modern J Pouch experts have concluded as much.

Hey CT

You are preaching to the choir here in regards to labels, i don’t really care what it’s called i’m just reiterating what the GI told me, that they are leaning to a diagnosis of Crohn’s.

I don’t have any inflammation in the pouch it is clear, i have a 15cm patch of inflammation above the pouch in the ileum, then futher up where the scope cannot reach there is another 3cm patch. So the pouch itself doesn’t need to be treated at the moment.

My symptoms are abdominal pain and bleeding, but curiously i have no urgency or loose stools, i still go around 6 times per day.

It might be the trust (geographical area of hospitals) that for some reason choose Humira as a first line, other trusts in the country may take a different approach.

After reading the GI’s report he acknowledged i mentioned Stelara and said it has around the same safety and effectiveness as Humira, but i’m guessing it’s newer.

The associated cancer risks of Humira scare the crap out of me so i may book another apt to see him to maybe push for Stelara instead.

It’s all happened so fast after 16 years of no meds and no new diagnosis that it’s just taking me a while to get my head around it.

Thanks

RB 15,

Like you my J Pouch proper is OK. Like you I have inflammation above the pouch in the neoterminal ileum, and, very significantly, a strictured J Pouch inlet which is believed to possibly play a role in the inflammation above the pouch due to the phenomenon of long term backsplashing stool. Turns out this pattern of inflammation turns up in a lot of long term pouches and, like you, mine showed up 16 years after I got the J pouch. I am now going on 30 years with the Pouch but the inflammation that I have been fighting for the last 10 is all at and above the inlet. Once I went on Remicade in 2015, the inflammation in the pouch proper cleared.

For these reasons, my experts have distilled the possibilities down to 2:

1. Inflammation is due to backsplash stool into the ileum over the course of many years, exacerbated by the stricture at the inlet causing a pooling of stool above the inlet and resulting bacterial overgrowth.

2. New/unidentified form of IBD, NOT Crohn's. I had a tentative Crohn's diagnosis but that went out the window due to the more modern thinking that the inflammation developing years after surgery is some new form of IBD, unique to J Pouches.

@CTBarrister posted:

RB 15,

Like you my J Pouch proper is OK. Like you I have inflammation above the pouch in the neoterminal ileum, and, very significantly, a strictured J Pouch inlet which is believed to possibly play a role in the inflammation above the pouch due to the phenomenon of long term backsplashing stool. Turns out this pattern of inflammation turns up in a lot of long term pouches and, like you, mine showed up 16 years after I got the J pouch. I am now going on 30 years with the Pouch but the inflammation that I have been fighting for the last 10 is all at and above the inlet. Once I went on Remicade in 2015, the inflammation in the pouch proper cleared.

For these reasons, my experts have distilled the possibilities down to 2:

1. Inflammation is due to backsplash stool into the ileum over the course of many years, exacerbated by the stricture at the inlet causing a pooling of stool above the inlet and resulting bacterial overgrowth.

2. New/unidentified form of IBD, NOT Crohn's. I had a tentative Crohn's diagnosis but that went out the window due to the more modern thinking that the inflammation developing years after surgery is some new form of IBD, unique to J Pouches.

You know, i don’t think we’ve ever conversed on here before but i feel like i know you and your story very well, as whenever i use the search function your posts always pop up, and you have been a wealth of information so thanks for that.

I was always fearful of a “Crohn’s” diagnosis over the years as i’m a worrier, but now it’s happened i’m more bothered about finding the right treatment.

The GI actually said on Tuesday that although he’s leaning towards Crohn’s he is having some sort of meeting / conference with several other GI’s and surgeons in the next week to come to a better consensus, so maybe they will conclude like your experts that it is a nameless new form of IBD. It sounds like a strange thing to say but it almost “feels” like a new type of IBD to me, quite different from my UC days back in the early 2000’s.

I have mentioned to both my GI and surgeon about the backsplash stool theory, they both kind of shrugged, but it makes perfect sense to me.

Do you take anything else to help / prevent further inflammation such as probiotics or any supplements?

Thanks again

That 3 cm patch of inflammation further up would generally be classified as a “skip lesion” and is usually treated as indicative of Crohn’s. The diagnoses aren’t absolute truth, but they can provide useful categories that help guide treatment choices. In any case it’s unlikely to be related to backsplash stool.

I hope the first biologic that you try does a great job for you.

@Scott F posted:

That 3 cm patch of inflammation further up would generally be classified as a “skip lesion” and is usually treated as indicative of Crohn’s. The diagnoses aren’t absolute truth, but they can provide useful categories that help guide treatment choices. In any case it’s unlikely to be related to backsplash stool.

I hope the first biologic that you try does a great job for you.

Thanks Scott, i’m reaearching biologics and whilst the efficacy seems generally great, the side effects are pretty scary.

Cheers

Hi RB15,

I just reread your anemia post. Did you already have that MR Sellink exam?

That abdominal pain you described that occurs after eating reminded me of something I went through in 2005, one year after my pouch was created. I had eaten some asparagus which caused a near blockage (that was largely resolved by a contrast agent in hospital). After that I still had pain after eating for several weeks.

Finally I was so desperate that I switched to fluid nutrition for about 3 days. Then I had a feeling that I should start eating again, and the problem had resolved. I didn't have that kind of pain ever since and it's hard to imagine what caused it.

Have you ever tried to stay off solid food for some days in that past years?

@RB15 posted:

It sounds like a strange thing to say but it almost “feels” like a new type of IBD to me, quite different from my UC days back in the early 2000’s.

Do you take anything else to help / prevent further inflammation such as probiotics or any supplements?

Thanks again

RB 15,

As to your first paragraph above, I always felt that way since having my first episode of pouchitis in the 1990s- it feels like a new type of IBD. This is why, when I first heard a Crohn's diagnosis back in 2007 or 2008, I questioned it. They sent me for CT Enterography, MRI Enterography and Prometheus tests, all inconclusive on diagnosis. The CTE and MRE both were suggestive of backsplash stool, probably exacerbated by pooling of stool above the strictured Inlet over the years.

As to your question on my current treatment, it's basically just Remicade and Vancomycin, an antibiotic not absorbed systemically, which is usually prescribed for cuffitis. I am better on Vanco than off, but a resumption of cipro and flagyl and other broad spectrum antibiotics has been discussed. I weaned off them 3 years ago and it was after stopping antibiotics that my stricture worsened and finally had to be dilated 3 times late 2021 and early 2022.

I started taking marijuana gummies for sleep issues a few months ago. Although I doubt they do anything for inflammation, they do slow down my bowels and nighttime BMs considerably, and I am sleeping better.

I don't take probiotic supplements per se but I do eat a lot of yogurt and drink kombucha on occasion. I also try to reduce my carb and sugar intake although it's not zero. It's sort of just reduced.

The main treatment changes Dr. Brand and I discussed were possibly a different biologic (Entyvio) and adding broad spectrum antibiotics back since my stoppage 3 years ago. The former idea was tabled after my scope as he thought the J pouch looked good, except the strictured inlet which we continue to watch. The latter option is in play. My main problem lately has been frequent leakage. My doctor said that was likely due to aging. I am 59 and closing hard on 60.

@SteveG posted:

Hi RB15,

I just reread your anemia post. Did you already have that MR Sellink exam?

That abdominal pain you described that occurs after eating reminded me of something I went through in 2005, one year after my pouch was created. I had eaten some asparagus which caused a near blockage (that was largely resolved by a contrast agent in hospital). After that I still had pain after eating for several weeks.

Finally I was so desperate that I switched to fluid nutrition for about 3 days. Then I had a feeling that I should start eating again, and the problem had resolved. I didn't have that kind of pain ever since and it's hard to imagine what caused it.

Have you ever tried to stay off solid food for some days in that past years?

Hey Steve

Sorry what is an Mr Sellink exam?

I probably didn’t explain the pain properly, i had my surgery and pouch formed in 2006, i had a blissful 10 years with a few minor bumps in the road.

In 2016 i had this pain in the pelvic area, that almost felt like nerve pain rather than from inflammation, got scoped and all was clear, and around the same time i developed anemia.

I asked my surgeon quite a few times if the 2 were related as it seemed a bit coincidental, he kept insisting i had 2 seperate issues 1) anemia is common in pouch patients 2) the pain was from Irritable pouch syndrome IPS.

So since 2016 i have took his word, i have suffered chronic daily pain and have had iron infusions every 5 weeks, i tried every pain medication known to man.

I’m starting to wonder if it was just the Crohn’s all along as back in 2017 i had a scope and he said i had a very tiny bit of inflammation above the pouch that was so insignificant that it was almost like a rash, he offered no treatment and i remember thinking to myself surely any inflammation is susceptible to get worse.

As i type this i have just had another iron infusion 3 weeks after my last one as i’m bleeding every day. I’m fed up and in pain.

My pouch functions great, no increase in frequency at all, i’m just in pain every day around my pelvic area and there is blood in the stool most days.

Sorry for the rant, had a rough day.

Thanks

@CTBarrister posted:

RB 15,

As to your first paragraph above, I always felt that way since having my first episode of pouchitis in the 1990s- it feels like a new type of IBD. This is why, when I first heard a Crohn's diagnosis back in 2007 or 2008, I questioned it. They sent me for CT Enterography, MRI Enterography and Prometheus tests, all inconclusive on diagnosis. The CTE and MRE both were suggestive of backsplash stool, probably exacerbated by pooling of stool above the strictured Inlet over the years.

As to your question on my current treatment, it's basically just Remicade and Vancomycin, an antibiotic not absorbed systemically, which is usually prescribed for cuffitis. I am better on Vanco than off, but a resumption of cipro and flagyl and other broad spectrum antibiotics has been discussed. I weaned off them 3 years ago and it was after stopping antibiotics that my stricture worsened and finally had to be dilated 3 times late 2021 and early 2022.

I started taking marijuana gummies for sleep issues a few months ago. Although I doubt they do anything for inflammation, they do slow down my bowels and nighttime BMs considerably, and I am sleeping better.

I don't take probiotic supplements per se but I do eat a lot of yogurt and drink kombucha on occasion. I also try to reduce my carb and sugar intake although it's not zero. It's sort of just reduced.

The main treatment changes Dr. Brand and I discussed were possibly a different biologic (Entyvio) and adding broad spectrum antibiotics back since my stoppage 3 years ago. The former idea was tabled after my scope as he thought the J pouch looked good, except the strictured inlet which we continue to watch. The latter option is in play. My main problem lately has been frequent leakage. My doctor said that was likely due to aging. I am 59 and closing hard on 60.

Yeah it certainly doesn’t feel the same as my original IBD even though that was apparently UC, but what strikes me about your situation is the amount of tests they were willing to give you to try nail down the diagnosis.

With me it seems like it’s just a scope and an MRI scan and there’s your diagnosis - Crohn’s

But to be fair Scott makes a good point with the skip lesion i have, it makes sense to point towards a Crohn’s diagnosis given the pattern.

I respond well to the antibiotics you mentioned, but Flagyl, ugh by day 4-5 i’m feeling like s**t, although curiously the 2 very short courses i have taken this year completely stop the bleeding like a tap, i mentioned this to both docs and they just shrugged it off, seems interesting to me though.

The marjuana is also interesting because my appeltite is shot, i looked into this and in the UK the only legal substance we have is CBD oil which unfortunately is not the mechanism in the herb that increases appetite, that’s THC which is still banned here. I have got plenty of friends that smoke it but from what i remember when i was younger - it just wiped me out, slept for hours.

It looks like you have got all bases covered and are well prepared for the future, it’s probably what has served you well for so many years to continue to work in a high stress job too, i think we are all forced to police our own situation to get the best out of life.

On a side note - i drink too much red wine

Cheers

RB 15,

I am fortunate to live in New England, and marijuana is now legal in Connecticut, Massachusetts and Maine for all purposes. Connecticut does not really have any recreational marijuana dispensaries, so I have purchased the gummies in Mass. and last week while on vacation in Portland, Maine, where there was 3 different marijuana dispensaries within walking distance of my hotel.

The gummies come in all formulations- some are pure THC, some are primarily CBD, and some are combinations of both. I have experimented as well in mixing and matching different gummies and I find a mix of THC and CBD gummies works well.

As far as THC's rep for stoking the appetite, I am aware of the rep, but have not noticed excessive, or even increased hunger or "munchies" while using the THC gummies. For me, the gummies cause me to be relaxed and tired,  which is imperative to get sleep. They also slow down bowel function considerably.

@CTBarrister posted:

RB 15,

I am fortunate to live in New England, and marijuana is now legal in Connecticut, Massachusetts and Maine for all purposes. Connecticut does not really have any recreational marijuana dispensaries, so I have purchased the gummies in Mass. and last week while on vacation in Portland, Maine, where there was 3 different marijuana dispensaries within walking distance of my hotel.

The gummies come in all formulations- some are pure THC, some are primarily CBD, and some are combinations of both. I have experimented as well in mixing and matching different gummies and I find a mix of THC and CBD gummies works well.

As far as THC's rep for stoking the appetite, I am aware of the rep, but have not noticed excessive, or even increased hunger or "munchies" while using the THC gummies. For me, the gummies cause me to be relaxed and tired,  which is imperative to get sleep. They also slow down bowel function considerably.

Well anything to help my appetite would be great, and the sleeping effects of THC would be a life saver for me as i developed insomnia during the pandemic, i don’t want to rely on alcohol too much to relax me enough to sleep before bed.

We are a little slow over here in the UK on the legalisation front, it will happen eventually.

My friend keeps telling me about a dry herb vape pen that he uses, and that the dose relaxes you but also keeps you fully functional, i might look into that.

Thanks

Here in Germany marijuana is also still illegal. And my GI didn't want to prescribe it, as I don't have do deal with pain.

The MR Sellink is an MRI of the small intestine where you have to drink about 1.5 liters of water with a certain sugar (mannitol) before for better contrast. I had one this morning, as during my last scope thay had to stop at about 40 cm because there was a narrowing in the bowel.

Did your MRI scan show any possible reason for pain or bleeding? Blood gets darker when it travels some hours through the bowel, does yours look fresh or darker?

I can't imagine why your doctors shouldn't be able to find the source of bleeding, as it causes significant anemia and may also be the reason for your pain, as both started at about the same time.

@SteveG posted:

Here in Germany marijuana is also still illegal. And my GI didn't want to prescribe it, as I don't have do deal with pain.

The MR Sellink is an MRI of the small intestine where you have to drink about 1.5 liters of water with a certain sugar (mannitol) before for better contrast. I had one this morning, as during my last scope thay had to stop at about 40 cm because there was a narrowing in the bowel.

Did your MRI scan show any possible reason for pain or bleeding? Blood gets darker when it travels some hours through the bowel, does yours look fresh or darker?

I can't imagine why your doctors shouldn't be able to find the source of bleeding, as it causes significant anemia and may also be the reason for your pain, as both started at about the same time.

I have ordered the vape pen that my friend uses, he says it dispenses a small amount so you are relaxed but not stoned.

Yes i had the MR Sellink 2 weeks ago, the drink is tasteless but i started getting bloated with it towards the end.

The bleeding is a difficult one because 6 months ago when i had the scope the surgeon found the 2-3 small ulcers but the inflammation above them in the ileum was not there it was clear, so a few months later i had the argon plasma coagulation which burnt the ulcers closed.

I continued to bleed so he set up another session with the argon plasma 6 weeks later, when he went up with it he said the ulcers which were causing some of the bleeding as they had stigmata had actually fully healed, and thats when he discovered this 15cm patch of inflammation above them.

He says it’s possible the bleeding is coming from the inflammation.

I asked my GI the same question this week - where is the bleeding coming from?

He said he wasn’t entirely sure and that it could be the inflammation or something else like more ulcers further up, the MRI wouldn’t show them and that a capsule endoscopy would be best to detect this.

The problem with the capsule endoscopy is that my surgeon has told me in the past that he would be hesitant to use it due to the risk of it getting stuck and then he would have to surgically remove it.

So i’m in a bit of a bind in that i don’t entirely know where or what i’m bleeding from, the GI said that whatever it might be he would hope the Humira would heal / stop the bleeding.

thanks

My GI was also sceptical about capsule endoscopy because of the danger you mentioned.

Have you tried to reduce antibiotics dosage after 2 or 3 days by 50%? I only got swollen legs as side effect after about 5 days of the full dose, but with 50 % only at late evening there were no problems. You may also try that combination of Cipro & Flagyl together, it seems to be very effective.

I would also try the therapy with adalimumab, the pens are easy to apply.

@SteveG posted:

My GI was also sceptical about capsule endoscopy because of the danger you mentioned.

Have you tried to reduce antibiotics dosage after 2 or 3 days by 50%? I only got swollen legs as side effect after about 5 days of the full dose, but with 50 % only at late evening there were no problems. You may also try that combination of Cipro & Flagyl together, it seems to be very effective.

I would also try the therapy with adalimumab, the pens are easy to apply.

Yeah it’s a shame about the capsule, it would be great for us to use as diagnosis tools.

I’m bot currently on any antibiotics, i mentioned them to both my surgeon and GI and they both said they would be pretty useless in my case.

I will probably go ahead with the adalimumab, i’m just trying to get my head around the cancer risks especially skin cancer as i have dysplatic nevi moles, which are a higher risk than normal moles for skin cancer.

What choices we have eh?

Thank you

RB15,

An increased cancer risk associated with TNF inhibitors (infliximab, adalimumab, etanercept, golimumab, etc) has not been reliably demonstrated across drug trials and population studies so this is a questionable association. Having unchecked systemic inflammation is also thought to increase risk for cancer so not being on effective treatment is likely riskier. The most common adverse effect of TNF inhibitors (TNFi) is infection but is still only seen in a low percentage of patients and usually in those on multiple immunosuppressive meds, often including steroids. You should consider any risk you read about to be a class effect, meaning it could apply to any of the TNFi. So I wouldn't stress about adalimumab vs infliximab. Adalimumab is certainly more convenient. Also the statement that there is less antibody formation to infliximab is not true. Infliximab is highly immunogenic and can cause infusion reactions (it is a humanized murine (mouse) antibody), serum-like sickness and certainly autoantibodies to the drug. As far as I know there has not been a cross-over study comparing Ab formation and there never will be.

CT Barrister,

There are more clinical trials (particularly "over the past 20 years") on infliximab because it has been around the longest. There are some retrospective studies comparing infliximab and adalimumab and they show comparable effectiveness in Crohn's. These were retrospective and not the desired prospective head-to-head trials, which would better answer the question but will never happen as these drugs are now considered ancient in the realm of biologics. INF was studied and therefore favored by GIs in situations like salvage therapy in the case of fulminant UC or Crohn's. This is because it can be given IV with weight based dosing so you have greater dosing flexibility and can increase dose and frequency in someone bleeding out in the hospital.

Can you provide some references that discuss this new form of IBD in pouch patients? It's very interesting and haven't read anything about it.

Regarding RB15's plight, I'm not sure why he couldn't be diagnosed with Crohn's at this point. There is sometimes confusion regarding UC vs CD at the time of diagnosis despite there being some distinguishing histologic and geographic features. Are there specific histologic or geographic features unique to this new form of IBD? IBD can go into clinical remission for years without treatment. I enjoyed 7 years without any UC symptoms off all medication between my initial diagnosis and when I eventually lost my colon. I've heard of some people having an even longer period of remission without treatment. So why couldn't someone have flare of CD years after colectomy + Jpouch, particularly if their CD was primarily colonic? Seems to me a colectomy may help to cool off the disease in these folks for quite awhile before it arises in the rest of the gut. The natural history of IBD is very heterogeneous making it difficult to make generalizations.

I disagree that there isn't some utility in trying to categorize the type of IBD. CD is fistulizing and is associate with small intestinal cancers. Primary sclerosing cholangitis is more common in UC, etc, etc. What is this new type of IBD associated with?

@Pouch2021 posted:

Can you provide some references that discuss this new form of IBD in pouch patients? It's very interesting and haven't read anything about it.

There was a large symposium on bowel disease at Columbia University in September 2021 and there has been reference to it in other threads.  The symposium included leading J Pouch experts like Bo Shen and others.  For these large volume J Pouch treating physicians, the trend of 15 year plus pouch patients, like myself and many other persons manifesting inflammation developing in the ileum on scope, had not gone unnoticed.  It was a theory that they are observing a new disease and not Crohn's Disease.  It is still inflammation and still needs to be treated, but the disease process developed AFTER SURGERY-not before.  Therefore, it is not something that the patient "always had" (hence my comment to the OP, because it is not something he necessarily always had, it is something he experienced after surgery).

Most standard J Pouch experts don't look up at the ileum for the first time after 15 years of scoping and say, "ooh! What's this???????"  They had been looking up every year for the first 15 years, and never saw diddly squat.  Then at the 15 year mark, plus, suddenly they see an avalanche of pouch patients suddenly start having inflammation in their ileums.

For many years, posters here have posted "I have Crohn's and the Sky is Falling threads", on the belief that this was a manifestation of the same disease process "they always had".  But they did not always have it.  And these experts started with that fundamental realization in their research.  I posted here to make the OP aware of the fact that his analysis that Crohn's was likely "what he always had" is possibly or likely not correct, because he did not always have it, and the belief is that this specific process is a new disease process.

It is NOT fully understood, at this time.  However my GI advised me he is aware of these studies and he believes that he and I are dealing with this new, as yet unnamed disease process.

In regards to Crohn's Disease being "primarily colonic" and then suddenly manifesting in the ileum 15 years later, that thinking is being rejected.  It's because of the patterns and nature of the inflammation being observed, which is not like traditional CD that manifests in the ileum after being "primarily colonic."

No generalizations are being made, but your 15 year "cooling off period" after surgery before the disease re-manifests is not what is being accepted by the experts.  If that were the case, why would those same patients (including me), who have had inflammation in their pouches since very shortly after their surgery, leading to the annual scoping that turns up the very belated manifestation in the ileum?  It does not particularly logically make any sense, as it is all ileal tissue except for the rectal cuff- where I have no inflammation.  If there was a cooling off period, why did things never cool off in these Pouches? And then start 15 years later in the ileum?

The role of backsplash stool is being studied in this as well because it does produce bacterial overgrowth above the Pouch.  So that is what they are looking at and there are no conclusions yet on what role this plays in the disease process.  However, what seems pretty clear is that there are no new treatments for the new disease process.  That's because it's inflammation and like other bowel inflammation it needs to be treated, and it is treated with the "same stuff that worked for old disease processes."

This post is likely over-simplifying things greatly, for the sake of meaningful discussion.

I will post a link on the symposium if I can find one.  I may have it buried in my PMs, because other posters here privately messaged me about it.

@Pouch2021 posted:

There are more clinical trials (particularly "over the past 20 years") on infliximab because it has been around the longest. There are some retrospective studies comparing infliximab and adalimumab and they show comparable effectiveness in Crohn's. These were retrospective and not the desired prospective head-to-head trials, which would better answer the question but will never happen as these drugs are now considered ancient in the realm of biologics. INF was studied and therefore favored by GIs in situations like salvage therapy in the case of fulminant UC or Crohn's. This is because it can be given IV with weight based dosing so you have greater dosing flexibility and can increase dose and frequency in someone bleeding out in the hospital.

True but I was only talking about effectiveness in treating J Pouch patients, and not Crohn's Disease.  I asked my J Pouch experts- both of them as I was in transition from Dr. Oikonnomou to Dr. Brand at the time and both have extensive J Pouch expertise- "why Remicade and not Humira?"  You see I am not a dummy who meekly accepts what his Doctor tells him without providing his or her reasoning.  I ask questions, and I asked both of them their reasoning.  Both told me the exact same thing in 2015: there is more trial data on the effectiveness in treating inflammation in pouch patients with Remicade than with Humira.  Your conclusion with respect to CD may be correct, but that is not what I was talking about.  Your post follows the assumption about treating CD, but I do not follow that assumption, because we do not know what me and the OP are treating, however we do know we are in both of our cases treating a pouch patient.

@Pouch2021 posted:

Having unchecked systemic inflammation is also thought to increase risk for cancer so not being on effective treatment is likely riskier.

I completely agree with this statement and I believe that RB 15 seems more concerned by getting cancer from the treatment than from the inflammation being treated.  Although both risks are small, the former is likely smaller.  It also reminds me that Dr. O was part of a clinical study at the Cleveland Clinic on Pouch cancers back in 2009 or so.  He personally told me that the common denominator on most Pouch cancers were (1) severe pouchitis, (2) ineffective or no meaningful treatment of it.

I am a cancer survivor myself, having had stage 3 Thyroid cancer which led to treatment that included thyroidectomy and radiation in 2015.  The commencement of Remicade had to be delayed over 6 months while I had that treatment, and Dr. Brand was concerned that my Pouch would worsen badly over that time.  What ended up happening was that the Pouch inflammation itself cleared up before my next scope after starting Remicade.  The inflammation at the inlet and above it did not, and was resistant to treatment and continues to be.

So I got cancer before ever being on any biologic, proving that you do not need to take a biologic to get cancer.

Thanks for both of your replies and insight Pouch2021 and CT!

Pouch 2021 - It’s always reassuring to read the cancer side effects are not entirely properly studied / overblown with biologics, and yes i’m well aware of the dangers of unchecked inflammation.

The 15cm of inflammation in my ileum was not there 6 months ago it was totally clear apart from tiny ulcers that had no surrounding inflammation. So this Crohn’s thing has “appeared” quickly on the scope, it may have been there a long time bubbling away though as i have had left lower side pelvic pain for years.

To both -

You are both far more qualified than me on the subject of a Crohn’s or new type of IBD, both make sense to me, i do fit the category that CT lays out of being 16 years out and having clean scopes until out of nowhere a big patch of inflammation has just appeared.

There is one difference between me and CT and i’m not sure how important it is to the discussion - it’s that i have never shown any inflammation in my pouch in 16 years, i don’t even think i have had pouchitis, i have definitely had some bacterial overgrowth issues that get better within 1-2 days of a course of Cipro.

It’s my own engagement party this Saturday a big garden party with music and plenty of drinks etc, i asked my GI if i could increase my Prednisone dosage short term to get me through it and to get me on a good level before starting the Adalimumab (just found out the brand name is Angevita)

He agreed and i have been on 30mg since last Wednesday, but there is still some blood in the stool which is a bit unnerving, as both my surgeon and GI thought there was a possibility the bleed is coming from the inflammation, but they were not 100%.

My concern is that i’d imagine prednisone to have tampered down that inflammation enough by now to reduce the bleeding? Which leads me to think that maybe the source of bleeding is from something else such as an ulcer / ulcers that the MRI could not show up.

If this is the case then would you expect a biologic to help heal an ulcer? I’m fed up of having a full iron infusion every 3 weeks, i feel like it’s really killing my body, i feel so ill after them.

I’m having to wait another 2 weeks to see the GI again to discuss the Adalimumab and get my blood results to hopefully get the go ahead.

I’ve read alot of success stories of biologics, and i’m keen to start, i hope i respond well to them as i would take anything right now to stop the pain and blood.

On a side note i had some weed last night via a dry vape pen i bought, its a cool little device that heats up and gives you a minute to take a few drags, felt relaxed and calm straight away, but then i took it too far and had too much, it wasn’t until i climbed into bed that i started having a bad high, anxiety, paranoia and a panic attack.

I havent been stoned for over 20 years and my body wasn’t ready for alot of it, so next time i will have a few hits then leave it at that, it did help the pain too.

I seem to have alot of trapped wind in that lower left quadrant that is causing even more pain, it must be around where the inflammation is, so i have started a course of Doxycycline to try get rid of the gurgling and build up of gas that takes all day to expel.

Thanks again for the replies and debate!

RB 15,

Good luck with your engagement party. I certainly hope you can find something that enables you to be good through that important life event. But I am concerned by your bleeding. I have never had bleeding from inflammation in my pouch. I had tons of bleeding from my UC inflammation for 20 years- large, excessive amounts of blood- but none from my Pouch and Neoterminal Ileum inflammation I have battled for 27 years or so. This is another reason why I always felt I had some new disease and that my J Pouch surgery was a "trade up" in diseases, one I would do over again in a heartbeat.

Regarding me, unlike you, having Pouch inflammation for 15 years after surgery and then only seeing inflammation in the ileum at the 16 year mark after getting the Pouch, I think this is the more common scenario based on posts I have read over the last 10 years on this board.  I have seen these same reports from many other posters and it's usually been made in "oh no I have Crohn's!" type rant threads that contain lots of tooth gnashing over possibly being misdiagnosed. But you can't be misdiagnosed with something you didn't previously have. Why you have inflammation now in the ileum but not before in the Pouch is a mystery, but what my history on biologics has shown is that it is more effective on the inflammation in the pouch than in the ileum. This of course may be, in my case, partly due to my strictured inlet and backsplashing stool. The inlet has been strictured to some extent since before I started Remicade in 2015, and it got worse over the years to where 3 balloon dilations happened in 2021 and 2022 and more will likely happen in the future.

Good luck getting a handle on the source of the bleeding.

@RB15 posted:

On a side note i had some weed last night via a dry vape pen i bought, its a cool little device that heats up and gives you a minute to take a few drags, felt relaxed and calm straight away, but then i took it too far and had too much, it wasn’t until i climbed into bed that i started having a bad high, anxiety, paranoia and a panic attack.

I havent been stoned for over 20 years and my body wasn’t ready for alot of it, so next time i will have a few hits then leave it at that, it did help the pain too.

I should have mentioned that some friends of mine have asked me to try some of my marijuana sleep gummies, and some of these gummies are quite potent. My office manager who has sleep issues as well told me that only one of the Zonked gummies threw her for a loop and she had to cut the gummies in half.  They are potent. 2 or even 1 may be too much. The user has to resist the temptation to take more because they don't really take effect for an hour or so.  Always start low and slow with any marijuana product. Too much is definitely not a good thing.

@CTBarrister posted:

RB 15,

Good luck with your engagement party. I certainly hope you can find something that enables you to be good through that important life event. But I am concerned by your bleeding. I have never had bleeding from inflammation in my pouch. I had tons of bleeding from my UC inflammation for 20 years- large, excessive amounts of blood- but none from my Pouch and Neoterminal Ileum inflammation I have battled for 27 years or so. This is another reason why I always felt I had some new disease and that my J Pouch surgery was a "trade up" in diseases, one I would do over again in a heartbeat.

Regarding me, unlike you, having Pouch inflammation for 15 years after surgery and then only seeing inflammation in the ileum at the 16 year mark after getting the Pouch, I think this is the more common scenario based on posts I have read over the last 10 years on this board.  I have seen these same reports from many other posters and it's usually been made in "oh no I have Crohn's!" type rant threads that contain lots of tooth gnashing over possibly being misdiagnosed. But you can't be misdiagnosed with something you didn't previously have. Why you have inflammation now in the ileum but not before in the Pouch is a mystery, but what my history on biologics has shown is that it is more effective on the inflammation in the pouch than in the ileum. This of course may be, in my case, partly due to my strictured inlet and backsplashing stool. The inlet has been strictured to some extent since before I started Remicade in 2015, and it got worse over the years to where 3 balloon dilations happened in 2021 and 2022 and more will likely happen in the future.

Good luck getting a handle on the source of the bleeding.

Yeah I’m frantically trying to get myself feeling healthy enough to get through this party, it’s not ideal but when we booked it i was under the impression i had a few ulcers that would be healed by the argon laser and that the blood will have stopped, not that i will have a new type of IBD.

It sounds like you have been through alot and it’s quite inspiring for me to read this stuff that you can continue working hard as a Barrister and living a good quality of life.

The bleeding concerns me, and also the attitude of my GI and surgeon to it is a bit worrying too, they don’t seem 100% sure where it is coming from and also don’t seem to be suggesting any new strategies to find it, they just want me to start the Adalimumab in the hope that it stops it.

One thing that i have noticed that does stop the bleeding is - antibiotics! Flagyl turns the bleeding off like a tap but it makes me too nauseous to take it more than a week, and the Doxycycline i started yesterday seems to have stopped it so far too.

I have mentioned this to both doctors as i think it’s very interesting, but again they both seem a bit disinterested. Do you or anyone know of any mechanism of an antibiotic that would stop the bleeding of an ulcer / inflammation? And also what that might suggest about my condition?

Hopefully the biologic will reduce the inflammation in the ileum, have you or your doctors considered trying Humira or Stelara for that stubborn bit of inflammation? Could be worth a shot.

Regarding the weed, i spoke to my friend who supplied it and he said because the effects layer up in your body over hours, it’s easy to think you need more and more, but that i need to take it much slower and wait, scared the crap out of me!

Cheers

The question of the antibiotics effect is an interesting one. For me none of the biologicals or similar meds worked. But with antibiotics inflammation in the ileum is largely reduced as well as urgency. My personal explanation is, that inflammation is bacteria induced, whether by dysbiosis or a weakened mucosal barrier (or both), who knows.

For you inflammation seems to be located at discrete ulcers which tend to bleed.

My last scope was also different than all the previous ones, since I had used antibiotics chronically for 6 months before. There was no more laminar inflammation at the end of the ileum but only some whitish spots, probably ulcers. And I do not have problems with bleeding.

@RB15 posted:

Hopefully the biologic will reduce the inflammation in the ileum, have you or your doctors considered trying Humira or Stelara for that stubborn bit of inflammation? Could be worth a shot.

Those 2 biologics have not been mentioned as the preferred second choice biologic. The preferred second choice biologic mentioned by my GI is Entyvio. His reasoning is that it has a completely different mechanism of action than Remicade. However, he has been reluctant to recommend the switch because:

(1) Remicade cleared up inflammation in the pouch, which previously featured large but bloodless ulcerations;

(2) Once you go off Remicade, there is no looking back, and I would sink or swim with Entyvio, a concerning unknown. In short, my GI essentially has accepted that the "Devil you know is better than the Devil you don't know." He doesn't want to roll the dice going off Remicade;

(3) The focus of our "treatment tinkering" discussions has been switching antibiotics- from Vancomycin to those 2 old reliable big gun broad spectrum antibiotics, Cipro and Flagyl. It was noted that I kept the stricture under control taking Cipro and Flagyl for years until I was emboldened to stop them in 2019, after which the stricture at the J Pouch inlet tightened up like a Hangman's noose. I suspect that change is likely to happen when I finish my current scrip of Vancomycin.

SteveG - I find it very interesting about the antibiotics tackling your inflammation and also stopping me bleeding, i feel my doctors should investigate this further or at least think about it, as i’d want to know I definitely need to biologic medication rather than a long course of antibiotics.

I have a theory about my bleeding and its triggered by stress, for example if i were to be driving to work and realise i had not locked the front door of my house, i would get that momentary butterfly feeling in my stomach, and that is literally enough for me to bleed a few hours later when i next empty my pouch.

I believe my stress / anxiety is weakening the gut mucosa and allowing bad bacteria and pathogens to enter thus causing inflammation.

One question regarding Doxycycline, i started a course yesterday to try reduce the painful wind im getting at the moment, and it has worked but it is giving me the same type of nausea that Metronidazole gives me. I was wondering if i would be ok to take just 1 tablet a day instead of 2? And would it still be effective? The tablets are 100mg

I’m wary of messing up my microbiome more than it already is!

CT - That makes alot of sense regarding the Remicade, is your doctor not too concerned about the stubborn inflammation in the ileum or is it kind of in a simmering state?

Cipro has always worked great for me, although i noticed some joint pain on the last course i took which worried me slightly, but then again it could be related to the IBD, i almost got a script yesterday for Cipro instead of Doxycycline but remembered im on 25mg of Prednisone now and it’s risky with the cipro.

Cheers guys

@RB15 posted:

CT - That makes alot of sense regarding the Remicade, is your doctor not too concerned about the stubborn inflammation in the ileum or is it kind of in a simmering state?

The inflammation in the ileum can be characterized as simmering, they are scattered ulcerations which look similar to what was in the J Pouch before the Remicade cleared those up.

Whats much more concerning is the inflammation at the the J pouch inlet. It led to 3 balloon dilations already and the goal in my treatment is to avoid having to be dilated again, if possible. My doctor thinks future dilations may be necessary/inevitable, but my hope is that resumption of the Cipro/Flagyl regimen will keep the dilations at bay at least for a while.

@CTBarrister posted:

The inflammation in the ileum can be characterized as simmering, they are scattered ulcerations which look similar to what was in the J Pouch before the Remicade cleared those up.

Whats much more concerning is the inflammation at the the J pouch inlet. It led to 3 balloon dilations already and the goal in my treatment is to avoid having to be dilated again, if possible. My doctor thinks future dilations may be necessary/inevitable, but my hope is that resumption of the Cipro/Flagyl regimen will keep the dilations at bay at least for a while.

Well i wish you all the best with that, from what i’m reading and researching it seems the most pertinent thing is to get good treatment quickly, and not let things start to spiral.

The more i read about biologics the more i realise just how much a revolutionary development in treatment it has been, had i had a few more years before my surgery i may still have a bowel, so i think we can all be thankful for the choices we now have, and i hope it gives you some sort of piece of mind for the future despite your current good situation.

Thanks

@RB15 posted:

... One question regarding Doxycycline, i started a course yesterday to try reduce the painful wind im getting at the moment, and it has worked but it is giving me the same type of nausea that Metronidazole gives me. I was wondering if i would be ok to take just 1 tablet a day instead of 2? And would it still be effective? ...

I have no experience with Doxycycline, you better ask your doctor if that would be ok. For Metronidazole I already recommended you to try a lower dosage if you have trouble with nausea. The normal dose of Cipro & Flagyl caused swollen lower legs for me after about 5 days, while with half of it (at late evening only) there were no remarkable side effects.

Hello again.

I just have a quick question.

Im still bleeding enough to need a full IV iron infusion every 4 weeks and it has my surgeon and GI stumped.

They don’t think the inflammation i have would cause that amount of blood, and believe the Humira would be healing any small ulcers by now, so are sending me to see another local surgeon next week to cast a fresh eye over it.

My question is regarding internal hemorrhoids -

for quite a few years i sometimes notice a small quite firm lump just inside my anus when im applying fissure ointment, it is usually there when im having problems, then can disappear for months.

I always assumed it was a skin tag or maybe some stool, but this morning i could feel it after bleeding alot in the last few days, its always in the same spot and feels the same, it is not painful either

Could this be an internal hemmorhoid kind of prolapsing slightly, which then retracts again?

It would solve a big mystery as to the bleeding im having.

Also, with pouches can internal hemmorhoid blood be medium to dark red if it has mixed with looser stool? The blood is not BRIGHT red.

Thank you

The lump you describe sounds to me like an internal hemorrhoid. They generally bleed bright red, but as you say that can get mixed well with looser stool, perhaps changing the color. Hemorrhoids can bleed plenty, but it isn’t hidden - it’s right in the toilet bowl. Are you seeing blood consistently enough to explain your iron levels?

RB15, I had such a small lump inside my anus several years ago. In my case it was a wrinkle that builds up in front of an anal fissure. You should try if you can see it with a mirror. I would also recommend seeing a proctologist. A fissure in the anal canal is often associated with stinging pain after a BM.

But a hemorrhoid can also prolapse when you push during a BM. If it retracts afterwards a hemorrhoid is more likely, a wrinkle would not do so.

Concerning bleeding, have you ever been scoped for a gastric ulcer? Such ulcers can cause immense bleeding and they can be treated with antibiotics like Flagyl - as you described that antibiotics improved your symptoms some months ago. It would also explain why the blood is looking dark. Again that's only a thought of mine and a possibility you might want to eliminate after that long time of anemia.