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Crohn's Disease
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Posted 8/8/2014 1:29 PM (GMT 0)
My 20 yr old daughter has been di agonised with crohns 2 yrs back....and since then she has been on medication and doctors have still not said that she is in remission....she is on immuran, lialda and humira inj which she takes every week....but now doc is saying that they are not sure if all these are working as her infection is not getting btr...but not getting worse either...physically she is showing improvement but her insides are not healing....luckily she is not bleeding since the last one yr but her iron levels drop and she needs constant infusion which is also worrying me....any idea why her blood count drops? And now that humira not working then what?..... confused
Posted 8/8/2014 2:31 PM (GMT 0)
There are other biologics that she can take, like Remicade (which I prefer because it's only every 6-8 weeks, or some do it 4), and you can play around with the dose and frequency a lot.

I know there are some others, like Cimzia, but I am afraid I don't know all that much about them. Others on here do. I hope she gets better soon! Is she getting iron injects at all or taking any iron pills in between the infusions? Does she try to eat a lot of iron-rich foods? Sometimes it's just an absorption issue - many of us have that problem and need to take vitamins of all kinds because we don't absorb them well naturally.
Posted 8/9/2014 12:23 PM (GMT 0)
Ok... Thanks... Have a sigmoid appt on 29th as doc wants to see n b sure b4 he changes meds...she does take vitamins..but no iron supplements as she constipates which again is not good for her seton....clueless n helpless ATM
Posted 8/10/2014 1:03 AM (GMT 0)
While many here have success with Humira, Remicade still has a much higher success rate for Crohn's treatment. You should strongly consider the change at this point.

As far as the iron deficiency, it's very common. It's not always from bleeding, as many Crohn's patients are anemic.

My Daughter had the same problem with iron supplements being constipating. Then last year we tried a vegetable based iron supplement. It didn't constipate her, and after several months brought her iron levels back up.
Posted 8/10/2014 1:43 AM (GMT 0)
That's interesting..... Vegetable based!!! Any names?

Shall know on 29th what's in the doc's mind
Posted 8/10/2014 3:05 AM (GMT 0)
I put my son on elemental nutrition so to avoid all the medications that often stop working. His crohns is in remission ir nearly there after a little over 2 months...no signs of it...and his iron is great. This is the first course of treatment in other countries because it is effective but the last course in the US because it calls for life changes that many are not willing to make.
Its up to her what kind of healing and side effects she wants to deal with. Everyone has to find what they can live with and without at times. Being on elemental nutrition is long term but no all or nothing. In time, a person can add foods in and many can go on to eat quite normally after a few years. If you get to the point where you are so sick from eating food...it is not so hard to give it up.
Posted 8/10/2014 9:52 AM (GMT 0)

Cromom said...
That's interesting..... Vegetable based!!! Any names?

Shall know on 29th what's in the doc's mind


The one we use is called "Iron Smart", by Lorna Vanderhaeghe. I'm in Canada so I'm not sure if available in the U.S.
If not, I'm sure you can find a similar product. My Daughter tried numerous types of iron, all with the same results of constipation, until she took this one.
Posted 8/11/2014 11:15 AM (GMT 0)
I shall find out if Iron smart is available in US
Thanks
Posted 9/8/2014 3:23 AM (GMT 0)
Hi Everyone. Please bare with me, this is my first time on any forum. Let me start by saying my name is Britney and I am 24 years old. I have had a change in my bowel movements for about 6-8 months but recently worsened. I went to my primary care Dr. a couple of weeks ago and I explained the problems that I am having. He did a blood test and took a stool sample. The stool sample came back that it was ok and there was no blood in my stool. Although my white blood cell count is high. he thought I might have had an infection and put me on antibiotics. They did not work. I was having many rare side effects from them. He told me to stop them. I went back to him within the next few days and he then told me I may have colitis. I should also mention then while I have been having this problem my stool is very flat and curly like. It kind of looks like a brain when all said and done. Sorry TMI

This is where the tough part comes in. about two weeks ago I started feeling like I was not hungry. So I do not eat much but when I do I am extremely bloated and then I get a little bit of pain in my lower abdomen. I also started with diarrhea yesterday for a good portion of the day. Im sorry TMI! I am also very fatigue almost all of the time. Some days I have belly aches and other days I am just bloated even when I do not eat.

So, now my primary wants me to go to a GI Dr. I was at the hospital three times yesterday and got absolutely no where. I am really hoping that someone is able to give me some advice and let me know that I am not the only one having this problem. I am scared and even more so now do to anxiety. I hope someone takes time to read this.

Thank! smhair
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