Wow RB15! I am so sorry you are going through this! I hope this group can come up with some great ideas . Hang in there! Hugs and prayers.

It’s possible that your reaction is to the formulation rather than the iron itself. It might be worth trying a different infusion (e.g. Feraheme vs. Injectafer). It might also help to take (or get infused) Benadryl prior to the infusion, if this is thought to possibly be an allergic reaction. To minimize your iron needs *any* source of bleeding should be controlled. If you’re female and menstruating then you might (for example) consider birth control pills to reduce menstrual blood loss. Has your stool been checked for occult blood?

Your iron loss seems too quick to merely be an absorption problem. We honestly don’t normally lose much iron unless we are bleeding or something is destroying red blood cells. Have you seen a hematologist? A surgeon wouldn’t usually be well-versed in all of the ways anemia can develop.

Not sure if this is a possibility for you but if you are mediterranean origin then maybe it is not your iron levels but your blood make-up.

Hubby was born in North Africa. He kept getting send to one hematologist after another because of his low red cell count.

Then he found a specialist who took one look at him and laughed. He informed him that 'his' normal was not everyone else's normal and that North Afraicans have a specific blood type that does not hold iron the same way...it was the first that I had heard of it but since then we have stopped panicking!

If not, I agree with Scott...Look higher up. Check for occult blood in the stool. Losing iron that quickly is not normal. Unless your body is losing blood your levels should not be dropping so quickly. Or your body/blood does not 'affix' iron to it...

Just a thought.

Sharon

Thank you everyone for the replies, DrBev, Scott and skn…

ScottF - i will certainly suggest the measures you set out at my next infusion, oh and fyi i’m a 38 year old male, and no i haven’t been checked for occult blood yet.

My surgeon and haemotologist work in the same hospital so know each other quite well, and have conversed with each other about my situation before, i will say that the haemotologist did suggest in the early days i have an endoscopy, and when i relayed this to my surgeon he said there was no need as he has quite a few patients who are iron deficient and believes it is strictly an absorbsion issue.

I must state that my surgeon has been excellent these last 15 years and i do trust him, but between him and the haemotologist there doesn’t seem to be any concerned urgency, it’s more like “we can check your upper GI if you want” kind of attitude.

So i guess back to me, you would think of all the experience and time i have spent in hospital i would breeze through the thought of any procedure, but quite the opposite, i know i should probably book myself in for an endoscopy but i keep putting it off as i hate hospitals and the whole process brings back horrible memories.

I know i will do it eventually, i cant keep putting it off forever, i need to know for sure what’s going on.

Thanks for your reply Sharon too

It sounds like you’re a good part of the way there - I’m glad you have a hematologist. Two other things: First, a stool occult blood test is quite trivial, at least at the yes/no level. It should cost about $1.49, but who knows what they’ll charge. Second, my only negative experience during my upper GI endoscopy was that the anesthesia relaxed my anal sphincter, which I hadn’t expected, and there were no prep instructions, so it was a bit messy - I might eat lightly/liquids and/or do a tap water enema beforehand if I have another one.

Scott - I will look into the occult blood test, i do get blood occasionally but i’ve had that ever since takedown every now and then, so even years before the anemia started.

Well my surgeon did offer to do both a pouchoscopy and endoscopy at the same time under general anasthetic if i wanted, he said he would be able to go futher up with the camera too.

I need to get myself sorted i’m really struggling to enjoy life at the moment because i can’t seem to get myself feeling well and pain free.

Do you have any advice or thoughts about me trying effexor for the Irritable pouch nerve pain? There’s horror stories all over the internet about that drug but there is a chance it could help me.

Thanks

If your pain is located above the belly button it may also be a gastric ulcer. That can cause considerable blood loss, too. Have you tried if an antacid helps for the pain?

I’m a little suspicious about calling it “nerve pain” while you (presumably) have unexplained bleeding. The first assumption I’d work with is that some unknown bleeding thing also hurts, and needs to be located. Sometimes two different things are going on, but more often it’s one. SteveG’s point about a peptic ulcer is right on target as a possibility, though your pain in the lower abdomen would be an unusual location for that. In any case, if Effexor makes you feel better in the interim, that’s great.

Hey guys

The pain has always been lower down around the pelvis area, the best way i have heard it described it like a headache in the pelvis, it’s hard to explain but it does feel like a nerve / neuropathy type pain.

The gastric ulcer is still a possibility though as something like that could be the cause of my rapid iron loss, so i think i will bite the bullet and book myself in for a pouchoscopy and endoscopy at the same time under general anasthetic.

I’ll give the effexor a shot in the meantime, i’m told the first few days will be rough going so i’m prepared for that.

Thanks again

Hey RB15,

I agree with Scott. Something is not right. Do your ferritin and Hgb increase appropriately with infusions and how low does your hgb drop in between? Anemia is generally due to one of three things or a combination: blood loss, RBC destruction (hemolysis in the vessels or outside of them), or poor production. If you have an appropriate increase in RBC mass and hgb with iron followed by a precipitous decline, blood loss seems likely. The life span of an RBC is ~120 days and your body should replace these dying cells if you have enough substrate (iron). You could be hemolyzing as well and have imparted production from chronic illness but these are less likely if you respond well to IV iron. You need a thorough work up for a source of a bleed and if none is found, a hematologist work up (it’s typically not very difficult to characterize anemia).

Good luck.

Hi Pouch2021

Thanks for the reply

I do respond well to IV infusions everytime, i don’t know what my HB or ferritin levels are at their peak but the pattern is that i have my IV infusion, then 5 weeks later i have my blood taken and the HB is always around the 100 (10) mark give or take, then i have the infusion again.

I don’t really have any other symptoms other than this visceral abdominal pain, which in the last week has responded well to Mebeverine which, as you probably know, is an antispasmodic.

I have accepted this situation for years now, but i’m growing a bit tired of the IV infusions especially as they come around so quickly, so i have put a call into my Haemotologist, he works in the same hospital as my surgeon, so it would seem the obvious thing to do is have a pouchoscopy and endoscopy peformed at the same time under general anasthetic.

Previous pouchocopies have been clear, but i’m yet to go through with checking high up via the endoscopy which might reveal something.

Just an aside - Do you or anyone else reading this know why iron deficiency anemia is so prevelant in us pouchers? My surgeon’s response was along the lines of “it can just happen”

Thanks

Another question i need to ask is - if there is a bleed somewhere higher up the Gi tract, then what treatment(s) are usually given?

I ask this as i forgot to mention that i have been on Prednisone for 3 years now, this was an attempt by my surgeon to try target the abdominal pain (IPS) after Amitriptyline lost it’s effectiveness.

It did actually work very well but i obviosuly couldn’t stay on them long term and i’m now at 5mg and will gradually taper further down over the next year, my abdominal pain has returned since lowering the dose.

Throughout my time on higher doses of the Prednisone it did not improve the iron deficiency, so i was wondering if the potential bleed is from inflammation, would the Prednisone not have temporarily improved this? And i may have seen it keep my iron levels steady?

Just a thought

Thanks

If there is chronic bleeding then understanding the source is very important. Without that the speculation can send you all over the place, as your prednisone pondering illustrates. For example, prednisone can cause peptic ulcers which in turn can bleed. The timing of your anemia may not be consistent with prednisone as a cause, but there’s also no good reason to expect the prednisone to have fixed it.

Your hematologist should be able to help you work out whether this is from bleeding, from red cell destruction, from failure of red cell production, or from a more obscure cause. Careful investigation that looks at (for example) the average age of the red blood cells can get pretty specific. Chronic disease can certainly cause anemia, in which case the challenge becomes figuring out what chronic disease is active in your body, and what you might do about it.

Hi Scott

Yes that all makes sense, the last time i had a conversation with my Haemotologist a few years back about this, he suggested an endoscopy, then my surgeon disagreed with him and they had a bit if back and forth, then i just decided to accept it is J Pouch related and common etc.

So should i be requesting blood tests for the red cell destruction and age etc that you mentioned? Apologies as this kind of stuff is way over my head, and sometimes with doctors in the UK you have to take the lead and initiative.

It’s just so i know what to ask him.

With regards to possible chronic disease, i don’t know where i would start, or what doctor to see, my surgeon is probably my best bet in that respect as GP’s over here have no idea what a J Pouch is.

Thanks again

Just a question...Do you have a J pouch or K pouch? I have a K pouch and as a younger woman, I was chronically anemic...in the end, it was a combination of a number of factors...hard periods, endometriosis which caused incredible abdominal pain, and my stoma bleeding without my really taking notice of it...it always bled a few drops at every single intubation and a bit in the catheter...I never mentioned it to my obsgy because for me, it was so normal that it never occurred to me...it was only after he looked at it one day and saw the blood on the stoma cover that he asked if it was a frequent occurrence...I had to cauterize my stoma regularly after that (still do).

Do not always look for a single cause but the combination of numerous less important factors that can be at the origin of the problem.

Sharon

Hey snk69

I have a J pouch, had it for 15 years and it functions great, even this weekend just gone i was eating pizza and drinking red wine, and it copes just fine. I was last scoped probably 2 years ago and it was all clear apart from a bit of backwash ileitis, my surgeon said it was very insignificant and like a very small rash, but maybe that has got worse in the meantime, i should probably be scoped soon anyway.

Yes it’s now in my mind that it may possibly be a number of factors, my surgeon has always been convinced there is no bleed and my anemia is normal (he has many j pouch patients with anemia) but as stated above - my levels are dropping too rapidly.

So i will reiterate to him and the haemotologist that i’m not convinced by their explanations.

Thanks

Not sure if I've asked you the question before but...are your ancestors from the Mediterranean basin?

Let me splain...hubby has chronic anemia...every time he gets blood work done everyone goes nuts...so his GP sent him to a hematologist...who was from North Africa...and he laughed 😅...yup, hubby is too. And apparently,  there is a hereditary genetic condition that is specific to that particular population.

There are many unknown diseases or syndromes that could influence your results. 

You might wish to ask your family if anyone else has a similar problem.

Sharon

@RB15 posted:

Hi Scott

Yes that all makes sense, the last time i had a conversation with my Haemotologist a few years back about this, he suggested an endoscopy, then my surgeon disagreed with him and they had a bit if back and forth, then i just decided to accept it is J Pouch related and common etc.

So should i be requesting blood tests for the red cell destruction and age etc that you mentioned? Apologies as this kind of stuff is way over my head, and sometimes with doctors in the UK you have to take the lead and initiative.

It’s just so i know what to ask him.

With regards to possible chronic disease, i don’t know where i would start, or what doctor to see, my surgeon is probably my best bet in that respect as GP’s over here have no idea what a J Pouch is.

Thanks again

The testing for hemolysis (haptoglobin, retic count, LDH) should be part of any hematologist’s arsenal. There are both mechanical and autoimmune causes. Perhaps the hematologist saw clear evidence of iron deficiency anemia in which case there must be bleeding from somewhere if your irons stores are depleted 5 weeks after infusions.  Anemia of chronic disease is diagnosed when a pt has normal to high ferritin (marker of inflammation)  and low to normal iron binding capacity along with a chronic inflammatory disease. Essentially you have enough iron but the chronic inflammatory state is effecting production. Giving iron is not going to help in that case. I read your above post and yes, steroids can definitely cause gastritis and upper GI bleeding. I guess another issue could be chronic kidney disease but you haven’t mentioned that. Good luck! I hope you find some answers.

Skn69, that’s interesting to read about your husband, but sadly i’m a pale skinned Brit from a Celtic background (both parents and ancestors from Scotland and Ireland)

Pouch2021 - Well the administration of the prednisolone was a year or more after the deficiency problem started so maybe that theory is out. With chronic kidney disease i’d assume i’d have other symptoms related to that?

I have screenshotted your replies and will be addressing them when i see my Haemotologist and surgeon, so thank you very much for that, you are clearly very well versed in this.

What i wanted to ask is - alot of J pouchers do have iron deficiency anemia (albeit not to the extent that i have it) as i’m part of the Facebook J Pouch group where there is plenty of people with the condition. Do you have any insights into why some / alot of Pouchers develop the condition? As i said earlier my surgeon kind of said “it can just happen and it tends to be absorbtion issues” without much more of an explanation.

Cheers

Hey RB15,

If you have chronic kidney disease you would have abnormal renal function on basic labs. Sounds like you’ve had a lot of blood work so this likely would have been detected. Iron is absorbed in the first part of the small intestine so anything that damages the mucosa in this region can affect it (Celiac, Crohn’s, ulcers, etc). I’m not sure why those with a j pouch would have more iron deficiency anemia as the pouch is a good 15 feet away. Possibly from chronic low level bleeding from the cuff, pouchitis, erosions at anastomotic sites, etc. Also, perhaps patients with pouches have more restrictive diets. I can’t think of a reason why having a pouch would cause malabsorption. More likely j pouchers have the potential to bleed and poor intake.  Im just speculating here. I’m not familiar with the literature in this topic.

Pouch2021

Yes there is definitely a decent sized sub section of J Pouchers on here and on the Facebook group that have developed iron deficiency anemia, and as i said my surgeon is not alarmed by this, he has many patients with it and says it is due to malabsorbtion and our new plumbing, it kind of sounded from his own point of view that it was a mystery he couldn’t fully explain.

His explanation is pretty frustrating as i had gone for 12 years with the pouch without any iron deficiency problems, and then it kind of happened out of nowhere.

I was tested for Celiac and it came back negative, had plenty of blood work done, had a CT scan, Pouchoscopies etc and nothing was found.

Which brings me to arrange an endoscopy so they can check the upper GI tract, which seems like an obvious place that could be causing the problem, it’s just that i have a bit if a phobia about this procedure and may need to be put under general anasthetic for it.

Regards

UPDATE

Hello everyone!

So i finally mustered up the courage to have myself checked out, and today had both a Pouchoscopy and upper Endoscopy under general anasthetic, this was to see if we could find any sources of bleeding that could be causing my rapid iron depletion.

Unfortunately when i woke up in the recovery room my surgeon was away in another theatre performing surgery, he had a busy day.

So i asked the nurses for any info and they tried to decipher his renowned terrible handwriting on the notes, and could make out i had an ulcer in the ileum / junction, and to see me as an out patient in 2 weeks.

A bit of background on this - a few years ago during a routine Pouchoscopy he found a tiny bit of backwash ileitis, he said a the time it was irrelevant as it was merely very a mild rash type of inflammation and didn’t want to do anything about it.

So, putting 2 and 2 together i’m guessing this area over time has turned into an ulcer.

I should point out that back when it was mild inflammation i still had quite rapid anemia.

I was just wanting to ask some questions on this as i have health anxiety, and waiting 2 weeks for my follow up is going to drive me crazy unless i can speak to you guys about it

(i know CTBarrister is well versed in this)

1)  Could this simply be a case that the backwash ileitis has gotten worse and developed into an ulcer?

2)  Does an ulcer mean i have Crohn’s? Or can the Backwash Ileitis be a seperate thing on it’s own even with an ulcer?

3)  What is the usual treatment for this?

4)  Could this be contributing to me losing iron so quickly?  I do think i have the common absorbtion issue that many here with anemia have, but i’m wondering if by fixing the ulcer it could improve it somewhat?

Some concluding points to consider are that - my pouch function is fantastic and has been for many years, i have no urgency, loose stools, increased frequency or any other negative symptoms, i get occasional blood which might be the ulcer, this happens maybe once every 2 weeks, but it’s always formed stool and then disappears at the next toilet visit.

Sorry for rambling, i’m just frustrated i psyched myself up for todays procedure and i have got hardly any answers as to what went on, as i usually get a good rundown from the surgeon or nurses.

I’m pretty nervous about this and worried about Crohn’s now, even though i don’t have any symptoms.

Thank you

From the description I can’t tell *which* junction the ulcer was found at - if it’s at the ileo-pouch junction then it could be backwash-related, but if it’s at the junction of the ileum and jejunum then it must have a different cause. Backwash ileitis can sometimes become ulcerated.

Any ulcer has the potential to bleed. Some can bleed chronically and some can bleed substantially. And some don’t bleed much at all.

For someone with IBD Crohn’s has to be considered when ulceration is seen, but ulcers are not diagnostic of Crohn’s. Nevertheless, if I were having active ulceration I’d probably choose to advance my treatment from antibiotics to a biologic medication, and I’d choose one that tends to work better for Crohn’s, since I’d ideally like to cover that diagnosis even if it were not confirmed.

@Scott F posted:

From the description I can’t tell *which* junction the ulcer was found at - if it’s at the ileo-pouch junction then it could be backwash-related, but if it’s at the junction of the ileum and jejunum then it must have a different cause. Backwash ileitis can sometimes become ulcerated.

Any ulcer has the potential to bleed. Some can bleed chronically and some can bleed substantially. And some don’t bleed much at all.

For someone with IBD Crohn’s has to be considered when ulceration is seen, but ulcers are not diagnostic of Crohn’s. Nevertheless, if I were having active ulceration I’d probably choose to advance my treatment from antibiotics to a biologic medication, and I’d choose one that tends to work better for Crohn’s, since I’d ideally like to cover that diagnosis even if it were not confirmed.

Hi Scott

Yes i was left with very little information, so i have booked to see him next Tuesday as i’m very impatient and struggle to sit on these kind of things, i can’t relax.

The Ileo pouch junction would possibly make sense given the mild backwash ileitis that was found there a few years ago, but i’ll soon find out.

Your theory on the treatment makes total sense, i’d rather take something stronger and have the peace of mind that it’s hitting the ulceration harder.

i’m still feeling groggy from the anasthetic, and i’m trying to process that i have a new problem, i’m finding it mentally difficult to deal with at the moment because i don’t have any symptoms and my pouch function is the best it’s ever been with no real issues since my surgery 15 years ago.

I hoping that a positive side effect from treating to ulcer is that it improves my anemia.

Thanks for your support, this forum is a life saver

Hello,

I just had my second iron infusion yesterday.

I had very low hemoglobin after my emergency surgery last may. It dropped below 7 three times and received a blood transfusion all three times

july blood work was fine, but October blood work showed hemoglobin down to 7 ish range.

both infusions gave me horrific burning diarrhea, so I feel your depression.

this pouch has been really not functioning so well for 6 months now, yet I soldier on.

I will  not succumb to the alternative.

hoping for better days ahead.

@New577 posted:

Hello,

I just had my second iron infusion yesterday.

I had very low hemoglobin after my emergency surgery last may. It dropped below 7 three times and received a blood transfusion all three times

july blood work was fine, but October blood work showed hemoglobin down to 7 ish range.

both infusions gave me horrific burning diarrhea, so I feel your depression.

this pouch has been really not functioning so well for 6 months now, yet I soldier on.

I will  not succumb to the alternative.

hoping for better days ahead.

Yes anemia is quite common amongst us pouchers, i just got fed up with having infusions every 5 weeks, and i may have found part of the problem today.

And yes, the infusions are certainly not a cake walk either, i feel like it ravages my body for days.

All the best to you!

Just an update and a few questions on what’s happened to me.

i will try to keep it as short as i can.

In December 2021 i ended up having both a pouchoscopy and Endoscopy at the same time to try see if there was a bleed relating to my anemia.

My surgeon found 2 tiny isolated ulcers just above the pouch, which he almost missed as he was taking the camera out, he told me they were not actively bleeding, there was no inflammation or signs of Crohn’s, and that they could be bleeding when the stool passes them, but was overall non plussed by them due to their size.

The pouch looked clean and healthy.

He gave me the option of something called Argon Plasma Coagulation to hopefully stop the bleeding and heal the ulcers, i said i would like to try it.

Fast forward to last week, after lots of messing around and bad organisation on their part, i finally had the procedure last Wedsnesday (this is private healthcare in the UK and i should of had it in Jan / Feb).

I didn’t have any sedation even though i was told i was getting it, and because of my chrinic nerve pain in the small intestine - it was agony, and i was quite vocal with my pain during the procedure, i tried my best.

Immediately after my surgeon told me that the ulcers were now stigmata (oozing blood) but that the procedure went well, and that there was now 3 ulcers but he zapped all of them, i did notice in the last month or so more blood in ths stool, so this makes sense, but still frustrating it had been left so long since the diagnosis.

Again he said the pouch looked great and healthy.

He said that healing these ulcers should cure the anemia, i felt great, and for the proceding 4 days i didn’t see a trace of blood in my stool, and the pain in the lower left part of my abdomen that i have had daily for years had gone, a 5 year weight had lifted off my shoulders.

Since Monday night this week though, i have been bleeding again just before bed time, then no blood all day the next day until bed time again.

Today my pouch felt a bit ifffy, i get this once in a blue moon where i have a bit of pain and then diarrhea, then it goes back to normal, but there was alot of blood tonight, it seems like the argon plasma thing only worked temporarily and now im back to square one, but even worse than before as the ulcers are apparently actively bleeding.

Im putting a call in tomorrow to book an appointment to see the surgeon asap, im feeling very down and deflated as this time last week i was celebrating the end of the blood loss and anemia.

Does anyone know what might have gone wrong? Could my surgeon have used weak settings? Could he have rushed it because i was in alot of pain?

And finally, what are the other options for coagulation or stemming a bleeding ulcer?

I did of course ask what the cause of the ulcers were, and he was vague, basically he said he was not sure because they didn’t present with additional inflammation or other characteristics.

Thank you.

I’m glad you found a pretty clear bleeding source and, presumably, the cause of the anemia. As you have suggested, stopping an ulcer from bleeding can be useful, but it doesn’t address the cause of that ulcer or, unfortunately, the next one. As I suggested upthread I’d probably be discussing a biologic medication with my gastroenterologist. Good luck!

@Scott F posted:

I’m glad you found a pretty clear bleeding source and, presumably, the cause of the anemia. As you have suggested, stopping an ulcer from bleeding can be useful, but it doesn’t address the cause of that ulcer or, unfortunately, the next one. As I suggested upthread I’d probably be discussing a biologic medication with my gastroenterologist. Good luck!

Thanks for the reply, Scott

Yes glad to finally find out the anemia’s potential source.

The biologic suggestion is interesting, does this mean you think there might be active inflammation / crohn’s type situation going on? Or can biologic’s heal these seemingly isolated ulcers too?

Just to clarify too, i generally do not have any associated urgency or other IBD symptoms.

Pouch has been functioning great during this process, just the occasional blood and of course anemia.

Cheers

@RB15 posted:

Thanks for the reply, Scott

Yes glad to finally find out the anemia’s potential source.

The biologic suggestion is interesting, does this mean you think there might be active inflammation / crohn’s type situation going on? Or can biologic’s heal these seemingly isolated ulcers too?

Just to clarify too, i generally do not have any associated urgency or other IBD symptoms.

Pouch has been functioning great during this process, just the occasional blood and of course anemia.

Cheers

I’ve reread this thread and realize that it could be premature to jump to biologics, since you don’t seem to have pouchitis. You really could use a diagnosis. I might have tried biologics before that extended period of prednisone use you experienced, and they might work, but who knows? Right now you have chronic inflammation that happens to be above the pouch instead of in it. Maybe Cipro would help, and it would be easy to try. Are you still having pain?

Scott F

This is the strange thing, my surgeon said there is no inflammation anywhere, just the isolated ulcers, he kind if described them as the size and look of a mouth ulcer, but now they are obviously bleeding.

I was under general anasthetic when i had the pouchoscopy back in December as he said he wanted to go up as far as he could, he said there was no other ulcers or signs of inflammation anywhere, i kept pushing him for some sort of diagnosis / Crohn’s etc, but he said it’s just the ulcers.

I have Cipro a few times in the last 5 years to control SIBO but it never helped the anemia, i suppose im just a bit disappointed this Argon Plasma Coagulation i had last week hasn’t seemed to help, although he did say i might need another session of it.

Just fed up of feeling ill all the time.

Thanks again

I think it would be hard to tell if there were a relationship between the Cipro and the anemia, unless you were on the Cipro for months. Stopping the bleeding allows anemia to clear up over a pretty long time - weeks to months - but doesn’t do much for it quickly. If the pain were letting you know when ulceration were active you might be able to use it to assess various treatments.

My surgeon's dietician recommended liquid iron supplement Floradix Iron & Herbs.  I've always had a terrible time with iron supplements and have gone the IV route in the past. This liquid supplement has worked well for me.  Since it is liquid you can start with a fraction of the recommended daily dose and see where your tolerance lies. I ordered from Amazon.

Scott - That’s an interesting point on the Cipro, another problem i have with it though is that the last time i took it i was getting some pretty bad joint pains, i have used it sporadically for years so it kind of felt like it was creeping up on me.

AMB - Thanks for the tip and i have used Floradix before, but i have now found out after many years that my anemia is likely due to blood loss, which i’m trying to fix.

Thanks again

Hello again everyone.

Just an update on my situation and a question.

So last Wednesday i went in for the 2nd session of the Argon Plasma to blast the ulcers as i was still bleeding.

To my surgeons surprise he saw that the ulcers were healed but i now have 10cm of inflammation above the pouch, then totally clear 60cm beyond that.

I was heavily sedated so he came and told me this when i was coming around in my room afterwards, his words were “you’re weird” and that i’m an “enigma” this is due to my body doing weird things back when i had the surgery in 2006.

Anyway he told me that the pouch was healthy and clear, the ulcers had healed but i have this inflammation just above the pouch, he said the closest thing he can diagnose it at the time was pre prouch ileitis, as he saw a tiny rash like patch there years ago but it was too insignificant to treat at the time.

I’m a bit of a hypochondriac so i asked if it could be cancer or some sort of dysplasia which he firmly said no to, and that he took some biopsies and to see him in 2 weeks time.

I forgot to ask about Crohn’s which i know is a possibility too.

I got through the post today his post procedure report, i will type it out in full -

The ileal pouch is healthy, 10cm of pre pouch ileum shows a villous appearance but no ulcers visible.

So my question is - what is a Villous Appearance? I googled it and one thing that came up was Villous Adenoma which can become cancerous, and the other thing i read was that villi (small hair like strands) are normal in the intestine.

So does he mean that despite the inflammation i still have normal looking villi that has not atrophied?

Or is it something more worrying?

He didn’t seem worried after the procedure just more baffled than anything as the area where the inflammation is was totally clear back in December 2021 and possibly 2 months ago when he did the Argon Plasma treatment.

Whenever i have read about pre pouch ileitis it seems that most people also have some sort of inflammation in the pouch too, maybe thats why he is also baffled by me.

Thank you

Small bowel cancers are *extremely* rare. Villous adenomas in the colon can be concerning, but that’s not your situation at all. This sounds most like pre-pouch ileitis, perhaps from backwash stool. Whether it’s appropriate to try to control it depends on the severity as well as your symptoms. Is you doctor inclined to treat it? Do you still have pain and anemia?

Hi Scott, thanks for replying as always

Yes he is on a mission to treat it as the anemia and blood have been going on for a number of years and was probably occult for a good while, the bleeding has got slowly worse / more noticeable over the years so whatever it is - it has developed.

Yes i have pain, occasional blood and anemia, the pain is a tough one because i have had it for 5 years and my surgeon back then diagnosed it as Irritable Pouch Syndrome as nothing showed on scopes and CT scan.

So i think there is a possibility i have both pain simultaneously from IPS and also this inflammation / ulcer situation as alot of the time the pain is in the lower left quadrant of my abdomen.

Do you know what Villous appearance would mean? Is it likely he means there is normal villi present despite inflammation in that area?

Thanks

In this case I don't think "villous" means much. Since he's mystified he's probably just trying to describe it as best as he can, to jog his memory for comparison next time he takes a look.

You'll have to ask what his understanding of "villous appearance" is. Perhaps he can also show you some photos of the scope procedure.

In my scope reports on chronic ileitis there were always mentioned whitish fibrin coverings / spots or pseudo-polyps which created a bumpy appearance.