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4 years later and still anemic with no energy

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Posted Today 10:30 PM (GMT -5)

Hi All

I am at my wits end and hoping someone has any kind of advice that can help.  My 16 year old daughter had her ileostomy surgery 4 years ago but she still struggles with anemia and total exhaustion.  She was diagnosed with UC so what I don't understand is why she still has such a hard time since she no longer has her colon.  I thought this was supposed to be the cure? 

Anyhow we've brought her back to the hospital and to see the GP and no one seems to be able to get her stable for very long.  They've done a transfusion once but generally just make her take these horrible Iron pills that give her cramps and then she feels better for a few weeks maybe a month then it's back to not being able to get out of bed without crying or going up a flight a stairs without being tired.  She takes her multi vitamins, B12, Vitamin D and Iron suppliments daily but still is feeling like garbage all the time.  She is also an athlete but lets just say this year is pretty much lost as she is having a tougher winter than normal.  Anyone else stuggle with low energy since their surgery?  How can I help her feel better especially since she is contemplating the Jpouch surgery this year and I'm worried that she's not going to have the energy to deal with the post surgery issues I've read about.  She hasn't made a full week of school since the beginning of December and she loves school so we know she's struggling so much and now wonder is my straight A student will even be able to finish the year.....

Posted Today 10:54 PM (GMT -5)
has she tried an iron pill called chromagen? that's the one i had to take and it was the only one that didn't upset my stomach. Although it may be a time release i can't remember.
Is it possible she has some type of small tear or something on the inside that she is leakign blood and doesn't know it? Or is her period really heavy or really long? and it's not that uncommon for young girls to be anemic, for what seems like no reason.
I don't know what they have tested, so i might be telling you stuff you already know. Is her output really fast? that could be a problem, she could be dehydrated and that could be a lot of the exhaustion. I can't see how it could be from the UC, unless the meds did some kind of damage to something internally, or a small tear or something was left, or if she actually had crhons.
Posted Today 11:14 PM (GMT -5)
Thanks Summerstorm I will ask them about that iron pill. I have been wondering the same about the tear or Crohns myself but hope it's more the no reason teen theory that will improve on it's own. She has had very liquid output for a while but has been doing so well at drinking and her pulse is good these days normally is very high when she is dehydrated. Her periods aren't the issue either. I don't know maybe she is dehydrated just seems to be more often then not these days and I'm getting worried.
Posted 2/8/2011 10:51 AM (GMT -5)
quiet
While I still had my colon and UC I was very anemic. The iron pills made me sick. Then I had iron injections once a week for several months. It helped some but against raging UC the injections were no match. Have iron injections been suggested? They are very simple. I would just show up, lean on a table, have the injection in my hip and go home. No after effects.

Dan
Posted 2/8/2011 2:52 PM (GMT -5)
I would be hounding the docs until they figure out what is going on. Maybe her Hb had been VERY low due to UC (my son's iron stores were zero) and maybe she menstruates very heavily and can just not get over the hump????This is only a guess but I would not let the docs off...it is their job to figure this out. I know it can take a long time to get your Hb back were it should be (it took my son the best part of a year) but 4 years is a very long time. My son also had iron infusions. They took a couple of hours and were done by IV in a hospital. They usually help a lot but you may need them every week for a month or two. As far as I know they will not do surgery if you are very anemic .....possibly complicating a J pouch operation?
Posted 2/8/2011 8:18 PM (GMT -5)
I am sorry your daughter is having those issues. I would get a second opinion (or as many as needed) to find the answer. Something is being missed:(
Posted 2/8/2011 8:36 PM (GMT -5)
Quite_Wisper,   Has she had her vitamin levels tested?  I am waiting on my B-12 results to come back.  Had the others done 2 weeks ago and my Vitamin D was almost non exhistant, so they put me on 50,000 units one pill a week and my others were very low, they dont know where all my nutrition is going?  Yes, I still don't have alot of energy, but not like her..she needs some help.  I will pray for her and you..

Leslie

Posted 2/8/2011 9:58 PM (GMT -5)
Quiet,

Get her vitamin B12 and MMA (Methylmalonic Acid) levels checked. If the B12 is low normal and the MMA is high, it means she has developed pernicious anemia and needs monthly B12 shots. They really work. Get her tested ASAP.

Rosemary
Posted 2/8/2011 10:13 PM (GMT -5)
I agree with Collicat; you really need to get answers to this before proceeding with more surgery. I would go to a large metropolitan city and find the best GI and get a second opinion. This is definitely not the norm for UCers.

Sue
Posted 2/9/2011 9:12 AM (GMT -5)
Hi All

Thanks so much for your comments give me other things to look into.

Her B12 is withing normal ranges, her hemoglobin varies from 80-115 ish she never quite makes it to a normal level before it starts dropping agin.  Her Iron stores vary as well with the hemoglobin from 4-9.  I don't know what MMA is or what her Vitamin D levels are but she does take a vitamin D suppliment daily.  She has an appointment next week her her GI doc so I will ask him about those as well as the Chromagen.  They are very reluctant to do the Iron IV injections as she had a reaction to solumedrol a few years back so it would be difficult to manage any kind of reaction to the infusion.  The doctors put her on the pill about 6 months ago to stop her periods as obviously that was not helping her situation and even so her numbers are still dropping. 

She didn't make it to school again today, now been since last Thursday however on the upside she did manage to stay awake for 6 hours yesterday to visit with her boyfriend. First time in a month so maybe she's turning around again.  My fingers and toes are crossed.

 

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