Anemia common/serious with Jpouch?

I can only go by my experience. I’ve had my j-pouch after my colon cancer diagnosis which was directly linked to years of Ulcerative Colitis... first stage 3 and then progressed to stage 4 (Metastatic). I also was diagnosed with Anemia after all of my treatment was completed. Treatment included surgery. Total Colectomy with temporary Ileostomy then the reversal to the JP. Chemo which consisted of Folfox ... 72hours (sent home with the infusion) and disconnected by a visiting nurse. It turns out that after I was genetically tested I qualified for a clinical trial with Immunotherapy (Keytruda) at Johns Hopkins. This was my 2nd opinion doctor because my 1st doc wanted to do chemo again without DNA test results. That’s when I knew it was time to move on. I knew through my research that Hopkins was a leader with clinical trials and clinical trials save lives. So went there and remained there. I did 4 infusions total and had to stop due to severe adverse reactions and a toxicity which almost killed me. And landed  in the ICU with a temperature of 105.1, and hives from head to toe. Then MRSA set in. It was AWFUL ..... BUT Keytruda saved my life. My last infusion was in 2017 and have been Stable since. My story is actually written up in The National Cancer Institute under ImmunoCommunity!  I submitted my story to give other patients Hope and Inspiration who are living with Metastatic Disease! 

So.... getting back to the Anemia... I was soooo sick. Most of my doctors think it was from the Keytruda.... I think it’s from the absence of my colon. I’m the one who insisted that I be checked for Anemia. I had alllll the symptoms. The Fatigue was consuming and I became more depressed with each and every passing day. And couldn’t leave the house. The clincher was ... my hair started shedding BIG TIME.  My Hemoglobin, Ferritin Level and Iron Saturation was at a dangerous low. I received 2 Iron Infusions spaced 2 weeks apart.  The infusions work right away whereas the oral pills take wayyy too long to START working. Plus orally ... it  does a number on your GI Tract and I just couldn’t take it anymore! I felt like I was reborn after only 2 infusions. I would definitely ask for the infusions especially with a J-pouch! Good Luck and let us know what  happens.  By the way if you want to read my story in the NCI site... it in the ImmunoCommunity Group under Colorectal Cancer and my name is Janie Peskin. 

Take care 

Janie

I've been dehydrated a couple of times and never had floaters and didn't have them in my U.C. days when anemic either. However, I have had what I call "stars" or flashes of light with migraines. Sometimes I get the migraine aura which affects vision. Sometimes even without the aura, my vision isn't as acute when I'm getting a migraine. When the migraine clears, my vision is back to normal. Am wondering if your severe headaches could be migraines.

Rose

Anemia and dehydration does cause fatigue and your description of light headiness when standing is normally associated with dehydration.

I suffered from similar symptoms as yourself although never dizzy or lightheaded, nor do I get the eye floaters.

I believe a salt deficiency could be a cause of our issues.

Before my takedown, I dehydrated to such an extent I was admitted into Hospital, often.

At the time, it was due to the loop ileostomy, as I wasn't absorbing a sufficient amount of fluids despite what I was drinking.

All the strange effects that occurred, such as an irregular hearthbeat, memory issues, muscle cramps, uncontrollable shaking, was all due to low potassium and it's this essential electrolyte that enables our brain to function and regulate the heart.

I've noticed, that when I eat a salty snack, my energy levels appears to lift, not instantly noticeable but there's a moment of realisation some hours later, although my Doctor dismissed this as a sugar rush ?

The large intestine would normally extract salt and fluid from its contents, especially during our sleep but as we no longer have a large intestine, we're not absorbing the essential levels from our diet.

Doctors advised to ensure I urinate no less than 3 times per day and it should be of a pale straw colour.

I've noticed my urine can be totally clear, so technically, I'm hydrated, yet I'm still experiencing the feelings of fatigue and lacking the essential electrolytes, especially potassium.

Thank you all so much for your replies! They're really helping me to parse everything in my head.

I had blood tests done at an urgent care last night. My hemoglobin and hematocrit--for the first time since 2011--were Normal! So, either it's a coincidence, or my single week of Now 36mg Iron has helped. No ferritin test was done, so no idea if my iron-deficiency anemia is still around. My symptoms are, though. My BP was also borderline Normal.

The urgent care doc did mention that "low blood volume" can cause these symptoms. Definitely related to dehydration, but not solely. I researched, and it just confirmed what I've thought: that I likely suffer from orthoststic hypotension. I'm currently trying to find a GP or cardiologist who will do a tilt table test, etc, and also help me to manage it. Lots of info online/YouTube with leg strengthening exercises, movements to offset the sudden drop in BP, etc.

I definitely intend to continue experimenting with salt and potassium, particularly by saving money with home-produced electrolyte drinks. If anyone knows of any good safe recipes, please let me know. I've read a lot about potassium, but am particularly cautious to not "overdose" on it. If I wasn't concerned about keeping my resting BP safe, I'd just eat a ton of salt, because I love its taste. I'd eat tons of bananas for potassium, if they didn't cause me such constipation ;{

Thank you all so much, too, for sharing your stories! I welcome any other advice, anecdotal or otherwise.

Orthostatic hypotension isn’t generally a diagnosis, but rather a symptom. For someone with a J-pouch it would usually be a sign of dehydration. Hydration status can definitely make anemia seem to come and go, at least if it’s measured crudely. Since the red blood cells don’t go away (or appear) quickly, they become more concentrated as hydration drops.

In past with UC when I got anemic, I stuck to wheatgrass juice and it helped alot. I continued it till the takedown. Now also everytime I visit my surgeon the supplement he recommends me is iron capsules. I told him that I don't feel like my iron levels are low anymore to which his reply is always you won't know until its late so keep taking a tablet a day. As for the dehydration or loss of electrolytes part I eat upto 5 bananas a day on avg. , I have made it my preworkout meal, so potassium is always in check. Rest I drink plenty of water , 1 litre first think in the morning and 1 litre 1 hour after dinner. I do this so that even if I forget to drink  enough during the day it keeps in check my overall fluid intake. At the gym I carry a large bottle of plain water , I've noticed that I get dehydrated much faster than all my buddies around.

You were asking about a hydrating drink so here is one to try.  I used it when on clears before my pouchoscopy this time and didn't feel so drained from losing electrolytes like I usually do. Its worth a shot anyway and isn't too expensive.

the juice from 1 lime

1 splash of cider vinegar

a pinch of  sea salt (I used the pink Himalayan sea salt) 

1/2 t. of stevia

add water to fill your cup. (I used a 32 oz. big cup.)

stir around and sip

I failed to tell you I used a Stevia Blend, which is why the amount is so high. (It blended Stevia and Erythritol.) Pure Stevia would make this amount really sweet 

Sorry about that!