Crohn's and Severe Anemia

[Tami Lynn]

Hi All!

My daughter Alyssa, who recently joined this forum, just went to the doctor's today after having symptoms of a bad CD flare up for the past 3-4 weeks (but it actually started 1-2 months ago).

She's been losing a fairly significant amount of bright red blood in her stools, and the doctor said that her hemoglobin is 6.8 and that she has become very anemic. Because oral iron supplements tear up her digestive system, he is going to let her have an iron infusion, but I don't know when they will get all of the information faxed over to the Oncology office and actually get the appointment set up (since today is Friday).

She's been having some strange symptoms like her heart pounding and the feeling of not being able to get a full breath and she has also had blood with every bowel movement today that seems to be getting worse each time she goes. She says she feels scared to go to the bathroom, but I told her that trying to not go wouldn't stop the bleeding b/c it's internal.

I'm looking for opinions of those who have dealt with this before (severe anemia) or anyone who has required a blood transfusion. I personally had a bad case of anemia many years ago (as a result of B-12 deficiency after a couple resections) that prompted a visit to the ER. I was having heart palpatations and became very disoriented. They told me my hemoglobin was 8 and that I was borderline for requiring a blood transfusion. If her hemoglobin is 6.8, which is lower than mine was at the time I was borderline for requiring a transfusion, should I be concerned?

I mean...I'm wondering if she is going to be ok over the weekend (considering the fact that she keeps bleeding the way she has been).

How will I know if she needs medical attention? Or maybe...I'm just being overly concerned or paranoid??? I don't know.

I look forward to hearing your opinions and feedback - thank you in advance!

 

[D Bergy]

Maybe a liquid diet would help allow the intestines to heal. If you could cook beef liver and blend it in with some other Iron rich foods or some Ensure and then doctor it up do you can get it down, you may be able to get some Iron in the system without aggravating the condition.

Fish oil is anti inflammatory and you can double the dose if needed. It cannot do any harm and seems to help me a lot.

I would keep a close eye on your daughter. Maybe calling a doctor and ask him what you should do in regard to her condition. I do not think it is possible for anyone here to really know.

Dan Bergman

 

[Dekar]

If the color is bright red, I believe she has fissures in the anal/rectal area. So a liquid diet like D Bergy suggested would ease the blood loss

 

[kpratte]

I'm kinda surprised they haven't given her a blood transfusion thus far. She is very low and by the sounds of it, having issues with it being low "heart pounding and the feeling of not being able to get a full breath". My doctors would have had me over at the hospital at that point.

I don't entirely understand your statement: "Because oral iron supplements tear up her digestive system". I've only found that they can upset my stomach. There are many different forms of oral iron, some I had issues with, others I did not. I'm currently taking Feosol (Ferrous Sulfate, 65mg elemental iron) and it doesn't give me any issues.

A low residue / liquid diet should help things, but she needs to make sure to add things high in iron to help bring up her iron. Here's a link for iron issues: http://www.pamf.org/patients/IronHandout.html . Also stay away from caffeine as it is known to block iron absorption.

- Ken

 

[Kev]

I knew someone who was anemic, went on oral iron supplements, and she too had a bad stomach reaction... developed bleeding ulcers, which made a bad situation much worse. As for blood loss from the bowel, I had that big time. doctors began to think I was exaggerating the blood loss, they thought my IBD was relatively mild. So I took photos... that made them take my claims seriously, that got me to the top of a queue for further exam, the exam showed that I needed emergency surgery. I know that it sounds extreme, in fact it was extreme.. but sometimes you have to get extreme to fight this disease. Just my 2 cents..

Diet is very important.. low fibre/low residue. Liquid meal replacements Vs solids.
One other extreme measure.. nicotine seems to have a positive effect on bleeding
from ulcerative or crohns colitis.. I get mine from smoking, but a transdermal patch
should have the same effect. I hesitate to mention it, but it sounds like she's in a very similar situation to the one I was in before I started smoking.. losing blood at an alarming rate, extremely weak, ended up in the ER in critical condition. It was in there, in a ward full of experienced patients, that I heard of the nicotine solution.
Eventually, 3 doctors admitted (very reluctantly) that it works, used to be the cure for it in the olden days. Anyway, I'm not advocating smoking, smoking does kill. I would suggest you consider the patch, only as a short term trial to see if bleeding slows. Just keep in mind that I'm not medically trained or qualified to give advice.
Just a another person with IBD who is willing to share their experiences. I hope things turn around, and she gets thru this rough patch. Keep us posted on her..

 

[D Bergy]

Calcium supplements will also block Iron absorption.

Dan Bergman

 

[iamalyssa]

Hey guys! So, I'm the daughter with the anemia :-( I, too, don't understand why the doctor doesn't seem to think too much of the number...and no, I can't absorb oral iron for some reason...It really burns. I think the thing that is most scary is the way I look (pale with dark circles) and feel (short of breath and rapid heartbeat). I just started prednisone today, and feel TOTALLY hyper already. I hope that my activity is not hard on my heart if I'm already having problems with blood flow. Okay, I really didn't offer much advice here...mostly just blogged...lol ...and I think I was supposed to offer advice...whoops...

 

[Kev]

Hey Alyssa... Relax, you are new here, you don't have to offer advice. There may come a time, somewhere down the road that this illness takes you, when you'll read another first timer post on here, and he or she will be taking their 1st steps with this disease.... and their footsteps will remind you of steps you have taken. And you will find yourself walking in their shoes, and that will prompt you to tell them where you have been on your journey, and what they may want to watch out for on theirs. OK?

 

[Creepy Lurker]

I tend to get pretty anaemic during flare-ups. The pounding heart and breathlessness are simply down to the inability to absorb oxygen.

Don't do anything strenuous. You'll feel marvellous after the infusion.

Iron causes bad burning sensations in my stomach, but I find that Omeprazole helps with that.

 

[Tami Lynn]

Thank you all for your sharing your experiences and input. I realize I am not going to get actual medical advice on this board (from professionals) but to be honest, some of the best advice (IMO) comes from the people who have actually lived with and dealt with this disease.

It's too bad there's not a way for all GI doctors to be able to have the experience of living with IBD for just ONE month before they are actually allowed to treat their patients who have it - if that were possible I think it would revolutionize the type of care we receive (ie: more considerate, compassionate and understanding doctors).

There's nothing new to share about Alyssa at this point, and no news is good news, right? We're just waiting for the weekend to be over so we can get in touch with the doctor's office to find out how soon they can refer her to the Oncology Center so she can get in for an infusion.

When I was severely anemic, they gave me iron injections in the hip with giant needles and it was sooooo slow (ouch!). It used to feel like they were using my hip for dart practice! ...and the nasty dark stains it left were awful <ugh!> They had talked about giving me an infusion at one time, but thankfully my iron levels improved enough that they didn't need to.

Has anyone here had an iron infusion before? I was wondering what exactly is involved with it. For those who have had it done, did you have any side effects or bad reactions? If so, what were they? I'd love to hear your experiences. This will help me know what Alyssa can or might expect when she goes.

Thanks!

Hope everyone is feeling alright and enjoying their weekend!

 

[Kev]

Damn Tami (pardon my french).. I never made the connection. That has to be tuff.
I still live in dread my kids will develop this too. My youngest is showing some pretty alarming early signs. I'd give anything to avoid either of them getting this. The only solace that you might take is that Alyssa is fortunate to have a parent who knows exactly what she is going thru. I wonder how many folks on here deal daily with a family member, or other close support, who literally has no clue what this IBD is all about? It's not much of a comfort, but I hope it helps you both cope in the long run.

As for iron infusion, I'm totally in the dark. I never heard of it, the closest (and its pretty remote) I can come is my mother suffers from pernicious anemia, and gets a B12 shot once a month. Same as the young lady who reacted to the iron pills, OK

Take care... All the best.

 

[Tami Lynn]

Hi Kev, thanks for the encouragement.

You know Mike Yarmo...the one who put this forum together? He and his brother were both diagnosed CD. I'm sure there must be others. I've heard arguements going both ways (ie: it's hereditary vs. it's NOT hereditary). Who knows...but one thing is for sure...the disease originated in HELL! LOL

Nobody else in my immediate family has ever been diagnosed with IBD. Of course, we have to wonder how many of our ancestors or distant relatives might've suffered with it under some other diagnosis. A lot of people were thought to have Tuberculosis of the intestine (could've actually been Crohns). Supposedly I had a great-grandfather who died of a bowel obstruction - they said he was vomiting feces (I know gross). I also have an Uncle (on my mother's side) who was dx with colon cancer - don't know if that could relate in any way or not.

Take care!

P.S. I also give myself B-12 injections once a month.

 

[Cog]

Good luck Alyssa - I too managed to score a 6.8 heamaglobin level - then they gave me two pints of blood and made me stay overnight. I know when I joked with my surgeon about it later he told me that the error margin in the test was high. I would still ask questions or at least ask them for a second test.

 

[Jeff D.]

Good luck Alyssa and Tami I would advise not to take fish oil because it will thin the blood and cause excess bleeding. When I was first diagnosed I was whiter than a piece of computer paper and also had dark circles. FOr me it eventually worked itself ouy when I could finally eat red meat. Also if you ahve to go to the bathroom just go because I did the same thing and ended up not going for a month and a half before being hospitalized.

Best of luck

 

[kpratte]

If your hemoglobin level is so low doing an iron infusion although probably less cost isn't what I think they do. At that point you need red blood cells and a blood transfusion is what I've had done which will bring up your numbers. They may still give you some iron to help keep your numbers up though.

P.S. I also give myself B-12 injections once a month.

Ouch, that sounds like "fun". I get mine at the doctors office.

- Ken