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