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Hello everyone

I’ve had my pouch since 2006 and had no problems until 12 years later when i developed iron deficiency anemia.

I should point out that at the same time i developed IPS with my only symptom being chronic pain around the lower abdomen, i always thought it was too much of a coincidence for both things not to be connected, but my surgeon has always assured me otherwise, and stated that the anemia is due to absorbtion issues, he scoped me and eveything looked fine.

Anyway, iron pills in the beginning worked but i developed an intolerance to every single version of iron in pill form as it brought on the stomach cramps, so for about 3 years now i have been receiving IV infusions.

The problem is that i have developed an intolerance to the infusions too about a year ago, and i get the same stomach cramps, shivering and feeling like absolute crap for up to 5 days after the infusion, it makes me feel very ill then gradually gets better.

This would be fine if i only needed the infusions every 6 months or yearly, but my iron drops at such a rate that i have to have a full bag of iron (1000ml ferinject) every 5 weeks.

So i get 3-4 weeks feeling quite well then it comes around again and im in agony for 5 days. I have never read about any other poucher having such drastic low levels such as myself and it’s getting me down, i can’t keep doing this for the rest of my life.

I’m going to be starting a low dose of Venlafaxine soon for the IPS pains, i tried Amytriptyline in the past and it didnt do much and the anticholinergic effects made me feel like a zombie, so the Effexor might be the lesser if the two evils and will hopefully help the pain, and subsequently may reduce the pain from the iron infusions (if anyone here is on Effexor, how are you doing on it?)

I suppose i’m just asking if anyone has got any suggestions on what i could do or try next? I keep asking my surgeon if he thinks i may have an upper GI bleed and he insists i don’t, but has offered an endoscopy which i hold my hands up and say i have been too much of a wimp to go ahead with so far.

My pouch function is fine, and i don’t feel like i have any Pouchitis, Cuffitis, or anything similar.

I wouldn’t mind if i had to have the fusions even if it was every 3 months, but every 5 weeks is really wiping me out and i feel like i’m in a perpetual cycle of pain, and it’s really getting me down.

Sorry for the long post i just needed to vent a bit too, any suggestions would be welcomed.

Thank you

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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

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

Last edited by RB15

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

Last edited by RB15

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!

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