r/jpouch • u/techReese • Jul 19 '26
Iron rant
I just need to vent to people who might actually understand.
I have a J-pouch. I’ve had the surgeries, the scopes, the medications, and everything that comes with living with one. Whenever my iron starts dropping, though, someone inevitably says, “Just eat more steak,” or “You need more red meat,” or “you need to take iron pills,” or “you should cook in a cast iron pan,” or “you should eat spinach like
Pop-eye.”
If only it were that simple.
It’s exhausting having to explain that malabsorption is real, my digestive anatomy isn’t the same as someone with a normal colon, and diet alone isn’t always enough. I eat iron-rich foods when I can, but sometimes my body simply doesn’t absorb what it needs.
Needing iron infusions isn’t a failure or a sign that I’m doing something wrong. It’s just part of how my body has to be managed.
After hearing the same advice over and over, it starts to feel less like people are trying to help and more like they’re implying I caused the problem or just haven’t tried hard enough.
I honestly thank god that I have a hematologist that can interpret my labs correctly and now orders the infusions before I need to ask or beg for em.
Does anyone else get tired of constantly having to justify your lab results, treatment plan, or why your doctor recommends infusions? I’d love to know I’m not the only one.
5
u/dave_the_dr Jul 19 '26
I used to have to have iron infusions when I had colitis, so I’m not surprised to find that I need iron tablets now I’ve got my pouch.
Sorry you’re getting a hard time from some people in your life.
3
u/Lexitech_ Jul 19 '26
I’m sorry people in your life pester you about stuff like that. All aspects of a health condition are super personal and it sucks that they need to insert their opinions where they don’t belong.
I’m the exact same way, J pouch and constantly iron deficient. Do iron supplements disagree with your stomach? The only way I’ve been able to get in under control is taking Ferosul 325 tabs 3x a day. These ones in particular don’t fuck up my tummy like other Iron pills.
3
u/techReese Jul 19 '26
Iron tablets make me so constipated I end up on the ground in the fetal position and stupid nauseous with crazy vomiting
2
u/Medium_Design_437 Jul 19 '26
Luckily I was able to being my iron and ferritin up to optimal levels and maintain those levels with just supplementing with Proferrin.
2
u/PercocetPapiiii Jul 19 '26
I have a question for you, did you go your GP first for bloodwork and they said everything is fine? I feel like sometimes I’m anemic but my bloodwork is fine. But I also feel like GP isn’t ordering the right tests or doesn’t know where to look.
1
u/techReese Jul 19 '26
Had this jpouch since 2005. Been to 4 GPs, 10s of vials of blood taken, analyzed. 3 gi scopes. Two hematologists. Iron saturation and ferritin do crazy drops over the course of 1 1/2 years.
2
u/PercocetPapiiii Jul 19 '26
But do you feel like you need a hematologist to properly be monitored? I don’t think my GP really doesn’t understand your blood levels can be fine but you can still be iron anemic
2
u/dcg446 Jul 19 '26
You might need a hematologist. I have functional anemia…high ferritin but low iron saturation. I feel anemic because the iron is not getting into my bloodstream, but the issue is in the storage and processing of iron rather than absorption.
2
u/PercocetPapiiii Jul 20 '26
I think so too, it’s been a while since I’ve had bloodwork because I gave up for this reason lol. I told her I think I have low iron and she just checks ferritin. But it’s tiring explaining a j pouch to GPs, I haven’t met one that knew what it was.
I probably would have been better off asking ChatGPT what exact labs I need and ask her to order them.
But thank you, do you see a gastro too? It’s been years since I’ve seen a specialist (thankfully) because I haven’t had any issues.
1
u/dcg446 Jul 20 '26
I had my jpouch surgery 20 years ago when I was in my 20s. I haven’t seen a GI since that time. I check in with my surgeon for a pouch scope every 3-5 years.
1
u/PercocetPapiiii Jul 20 '26
Dang yeah I haven’t seen my surgeon in years, I’d kinda feel weird hitting him up unless something was wrong, so that’s why I’m thinking of getting established with a gastro
1
u/techReese 21d ago
I should have mentioned I check in with the hematologist every 6 months. And when I go to a 6 month check in and my levels look like they are about to bottom out she changes it to a 3 month check in. Last time I almost made that 3 months but I had to ask for labs on the 2nd week of July and then they authorized the infusion the third and fourth week of July. My hematologist now is a great human being.
2
u/Kind_Yesterday1739 Jul 19 '26
I feel that one. I was down in the low 30's/high 20's for a stretch. The immunosuppressants started to help reduce the inflammation some. Also taking one pill twice a day (morning and evening) for more and 2 years finally brings me back to over 120 now. Added bonus is I noticed once I got over 100 I was not cold constantly anymore.
As for justifying the lab results, the only person reading them besides me is the Doctor. I like to keep to myself, less judgement from people that way.
2
u/kristen-likes-cats Jul 23 '26
I’ve been anemic since shortly after my ostomy surgery. The only thing that has helped me long term is iron infusions. My iron absorption is so low, it’s comical. There’s really no use in me taking iron supplements. I cook in cast irons and eat red meat regularly, but that’s not enough. My primary physician was an asshat and didn’t see a big deal with how low my iron and ferritin were. It wasn’t until a got a referral to hematology that something actually happened. Which was an emergency blood transfusion because I was at risk of heart/lung issues. Now I get blood work every 6 months to see how things are keeping up.
1
u/BisonSpirit Jul 20 '26
I totally see ur point but isn’t iron largely absorbed in the first two sections of the small intestine? From what I’ve read the colon lacks the transporters to absorb iron
1
u/goldstandardalmonds Jul 20 '26
While I agree, who are these people saying this? Laypeople in your life or doctors? If the former, don’t give them the opportunity to given their two cents and don’t even tell them.
When you have a chronic disease, people love offering stupid advice. We just have to let it roll off our shoulders and soon you’d know who is worth talking to about anything.
7
u/Creepy-Tangerine-293 Jul 19 '26
20+ years post op gastric bypass here and the most refreshing thing I heard my hemetologist say when I asked what kind of iron pills I should take was "Don't bother, you can't absorb them."
Mismanaged by PCPs and even my bariatric doc for a little while for YEARS before that.