Hi TrishB, Welcome to the forum, It’s a great place to connect, share and learn. The very best wishes going forward. 👍

 

Posted by: @trishb

Bile Acid Malabsorption with steatorrhea

I'd be interested in hearing more about this, especially post-surgery. 

Welcome Trish and Rufus!!

Sorry I can’t answer your question.  But I know how easy it can be to ignore symptoms. I ignored a lot, and paid the price by losing my colon. I don’t know for sure if things would have been different if I had gone to the doctor years ago and been diagnosed with and treated for Crohn’s. But no sense in looking back now. I’m just trying to learn from it and not ignore things in the future. 

We are glad to have you join our community. 

TrishB...welcome to VO! I'm glad to hear your cancer was taken care of & that your on your way to healing !  It sounds like a long journey for you to get here! 

I saw your post last night & did some reading at the Mayo Clinic site to get a grasp of what BAMS actually means & is! If your doctor diagnosed it then I want to say a big kudos to him for looking outside the box!! More so to you too for going thru all that testing & treatments! 

I'm 63 & dealt with IBS symptoms since age 10.  I'd go as long as 18 days or so without a BM, bloating & horrid pain then massive runs for days on end & oh the ring of fire, lol,  accompanied with excruciating pain, weakness fatigue, lack of appetite & so forth! It was no picnic or walk in the park for sure!! 

My 1st surgery was by a GI & Surgeon who diagnosed & tested me with a non-functioning large bowel & did a Cholectomy Ileorectal  Anistimosis with a J- pouch! I  healed well but had issues with the J-Pouch after  the 1st. year only increasing in watery urgent movements the majority of the time. This BAMS...If I had a doctor more able he/she may have suggested testing  for such a thing. As it was the Vancouver Surgeon /GI did the mobility test for the function of my bowl & strongly recommended the surgery. Any relief was welcome at that point. In 2009 after a severe blockage  & more following with many surgeries & a  very long hospital stay in 2 different hospital's, one 6 hrs from my present Town mounting to 13 1/2 months in hospital I came home weighing 98 lbs. with an Ileostomy & short gut syndrome. Before that stay I was so badly malnourished I was in for treatment of that at the same time.  

I'm always dealing with severe & chronic anemia as my iron dips to as low as 1 or 2 where it should be in the 100 to 150 range. Ideally for me I feel my best around 140 with iron. Look out energizer bunny!! Lolol!  I presently rec. Iron Infusions every 2 weeks for 6 weeks but need desperately to develope a plan where I'm watched & tested a lot more frequently & treated much sooner then at the last test of Iron low at ONE !!!! Its exhausting & I'm finding harder on me each time I'm this anemic. My plan will be for avoidance of this ever again! GP co-operation will be vital to achieve this so I have my work cut out for me!!! Ugh!!!

The other side of the coin is the Malabsorption issues from Short Gut Symdrome.  I've had to learn to prepare & eat my foods extremely differently in order to survive what my body is up to. My output is always very yellow & watery & well... thank Hollister for M9 Liquid deaoderant !! Lol! with the occasional too thick output or blockages which have lessened a lot since figuring out what my guts like to digest. Picky Guts!! Lololol!! 

After reading about BAMS, I doubt I'll ever be tested for it based on where I live! Lol! But I truly have to wonder if this is whats going on as well .  In the mean time, I eat to survive and struggle with all the unpleasant side affects of it all. I feel like my restaurant/college/hospital/train cooking experiences have given me a bit of a jump on preparing foods differently still making them appealing and tasty while absorbing the vitamins one needs from foods to live reasonably happy & healthy, lol,  has helped me tremendously. 

So, there's part of my history. I hope its helpful to you & I'm willing to answer any questions you may have. In the mean time...stay as well as you can be! 

@squeakyandliza Thanks for the warm welcome 😊

@veganostomy would it be best to start a new thread for the BAM and steatorrhea or continue the discussion here?

@dlkfiretruck Wow! You’ve been through so much!  Thank you for sharing your story and I am glad to hear you’ve worked out the food aspect.  The food has been a real challenge.  I am finding eating smaller, whole food plant based meals is helping.  When things are flared, I pass undigested oil in quantities large enough to dislodge my appliance.  This weekend was rough, went through 7 appliance changes in 3 days.  Ouch.  

I also struggled with anemia, my iron dipped to 3.  The fatigue that went with that was horrible.  Iron infusions helped.  I’m a few weeks overdue to check my levels again.  Lost almost 40 lbs in about 3months and am still losing a lot more hair than normal.  What a journey!

Thanks for your willingness to share.  I am happy to do the same.  🙂

@trishb...I like to think that sharing here is how we learn to cope & with all the tips here, it certainly helped me figure a lot out! I'm wondering if you have ever had a reaction to an iron infusion? Feb. 2020 I was in Hospital & reacted badly to the iron. My BP dropped terribly & I was told i spent 7 or so hours with my bed on a slant, feet up & giggled ridiculously almost the whole time. I kept 3 nurses, 2 doctors & the lab staff very busy that day. I remember very little of it, but my son tells me he & his wife received some pretty hilarious text messages from me! He also refused to let me read them!  Big Brat! Lol!  

By the middle of my "crash" they started giving me 2 units of  blood. My iron had been non-existent at that point. I was told the giggling was part of the flight or fight response. Instead of passing out cold like most would, I hung around for the party!! Lol, wish i remembered it but maybe its good I don't! Lol! 

I too pass fats a lot. Not huge amounts but I'm very aware that when I see fats floating it  means I'm w.cc such drastically low iron is almost too much sometimes. I tend to joke that I'm so tired my butt is still in bed! Lol! Do you ever experience more painful joints, muscles & ligaments when your this badly  anemic? Do you ever have Memory issues while anemic?? How about numbness? Do you have any Eye issues at all? 

I appologoze I know thats a lot of questions. I've never met anyone who has been this anemic before & It does feel a bit comforting! Lol! 

@dlkfiretruck  So sorry to hear the infusions don’t go well for you.  That’s rough.  The only side effect for me was an overwhelming need to nap after the infusion.

I felt terrible when the anemia was bad.  Headaches, ringing ears, sore tongue, irregular heartbeat and lots of dizziness.  There was some muscle and joint pain too but I tend to have that off and on frequently anyway so it didn’t really stand out as a new symptom.  My memory was affected too.  It was impossible to concentrate.  My fingers and toes would turn white or a blue-ish colour if I got cold.  My eyes were okay.  

Are you able to take and absorb any iron supplements?  I understand that can be a huge challenge for ileostomates.  I found a couple that worked before my surgery but was advised to wait 6-8 weeks to take them again as my gut needed the time to heal. 

@trishb

When I was so sick 3 years ago around the time my colon perforated, my hair started falling out. I was so malnourished, and septic. Basically all my hair fell out by about Thanksgiving of 2018. 👩‍🦲 I started taking a high dose of vitamin B from the health food store, and a hair, nails and skin supplement from Costco. My hairdresser also recommended some essential oils which I added to my conditioner. My hair grew back very nicely. I still take the vitamins, but have stopped using the oils. Hopefully as you get healthier, your hair will recover too. 

Posted by: @trishb

@veganostomy would it be best to start a new thread for the BAM and steatorrhea or continue the discussion here?

 

A new thread will be better as it makes the topic more focused and more likely to be searched/found by other people. 👍

@trishb...Hi again! There are many issues going on  with me that I never connected to the Iow Iron levels but when I did it felt a bit overwhelming. Hair loss was an embarrassing issue for me because I was able to still look reasonably healthy & hide the fact that I was having health issues again until the hair started dropping off my head & heaven forbid it was windy outside!! Lol!  I lost a 1 1/4 " band around the whole circumference of my hairline as well as the thinning all over, eyebrow loss too.   The band was the highly noticeable part that I as a women had  personal issues with. 

The weight loss was okay to deal with but only because I have clothing in a few different sizes, so I had several outfits I could wear.  The worst part of it was sitting. My boney butt was very uncomfortable to rely on!  I have struggled with my teeth my whole life having been born without enamel on the suckers.  But after I was in for that very long year, I had to get full dentures simply because eating was a challenge with what I had left & the small denture I already wore  just couldn't do the job anymore. So with weight loss came the fat loss too. In turn sore painful, boney gums under my new dentures. More eating issues developed...I made & ate a lot of soups! Lol!  Its a good thing I enjoy them! Lol!  I certainly don't miss what I had for my own teeth as I never liked them enough to smile with my teeth showing but the new dentures, Well, I smile & my teeth show now! 

Like Liza, I found the vitamin for skin,  hair & nails really did help plus I had read somewhere that this vitamin works better if taken with a meal or milk & 2ce a day as directed on the package.  Fats  help our system absorb it better.   I added a B12 and a vitamin for 50 plus ladies as well.  These helped but even with the iron in them I still was not absorbing iron.  The GI in Kelowna called my reactions to iron an Iron Sensitivity, so the iron I am given is whats usually given for those on kidney dialysis.

I've had headaches so frequently I never connected them to the low Iron. But just yesterday on a medical phone apt. with a Nerve conduction Specialist I was told the results of a CT Scan showed I have a moderate to severe pinched nerve in my neck that is likely causing the headaches, pain in my arms & a few other small issues...lol! Does it ever end?? My original apt. with this Doctor was to try & find an explanation for the numb feet that now rides up to my knees & to check the Carpal Tunnel in my wrists again. At 1st it was thought the feet issues were due to Tarsal Tunnel Syndrome but that was not as conclusive as first thought. 

So things have a been a bit challenging but who isn't up for a good challenge in life?!!! I'm one of those people who will take the time & fuss to repair a strip of Lace on clothing so I think I'm up for most challenges when there's a curve ball thrown in my direction!  Lol! I mean really,  if Glenn can walk around with poop running down his pants, I can certainly maneuver  life Anemic! Lolol!