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Posted 2/1/2008 6:42 PM (GMT -7)
my daughter is anemic and we don't know what to do to keep her iron level up-the dr suggested red meat again,hello, it does not agree with my daughter in any form and i've been trying to keep her on a modified low suggar-no dairy -low carb-gluten free...so fortified cereals are out and vitamins hurt and dr said no iron supplemements- any iron ideas?-thanks
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily
chewable vitamin
hydrocortisone enema at bed time 6mp50

Posted 2/1/2008 7:35 PM (GMT -7)
What do you mean when you write "vitamins hurt"? Most of us take vitamins daily! There is a compound called Forvia that is intended for IBD patients; several members writing here take it with good results. You are likely restricting your daughter's diet more than it needs to be. Quincy has already told you that in an earlier thread. There are cereals she could be eating, such as farina or cream of rice, puffed wheat or rice, & good ol' Cheerios. It seems that you are trying to treat her for lactose intolerance, celiac disease, & Crohn's when the gastro assures that she has left-sided UC. You have gotten attention from one of the best IBD gastros in the U.S., but you still want to have the final say & treat your daughter yourself. That is not a reasonable approach. She's a young adult, not a child. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
Posted 2/2/2008 3:27 AM (GMT -7)
Red Meat does not agree with many of us, so thats one thing that probably won't help.

As for vitamins, remember - they don't HAVE to come in a Pill form. You can get shake type things from the pharmacist and water desolvable vitamins. Remember - you don't HAVE to drink the whole glass at once. Drink a couple of mouthfulls and put it in the fridge for an hour, then have another mouthful. With the liquid desolvable type, you can also dilute it with far more water then the average person would.

It would seem that you are trying too many things that really are outside the scope of the *Major* problem at hand. Why is your daughter not on this forum? She really needs to be reading and posting questions herself. Your daughter needs to take the reigns to a point or she will just start to feel more trapped then she most likely already does. Help her, but let her take responsibility for her own health.

Stop limiting her diet. Let her eat what she wants. She will learn very fast what makes her sick and what doesn't. You will find she will already know what changes have helped and which ones have made no difference. As for you, quietly keep a food diary of what she does eat and it will help you discern any food allergies without the current drastic limitations on her diet. It is also good to show the doctors so they can see what she ate vs. how her BMs were the following day.

Just remember that there are always alternatives - cereals do not have to mean corn and wheat.

I have to agree with Old Hat and Quincy on the rest of it.

UC is complex - when you change one thing you can easily break another if you don't know its there to break.

In reference to your direct question, take a read of this wikipedia article on sources of iron. Things like fish, chicken, leafy vegies and tofu are all on the list. Here's another good list with more detailed food information. Hope this helps.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.

Post Edited (Severin) : 2/2/2008 3:30:31 AM (GMT-7)

Posted 2/2/2008 5:19 AM (GMT -7)
Is she taking vitamins in the morning? That can cause some stomach upset and/or nausea. Later in the day on a full stomach is always better for me.

about diet -- maybe I'm crazy but I just don't think that what I eat makes any difference. I might as well eat what I feel like eating. When I'm really, really sick certain foods don't appeal to me. But I try to make my choices based on whether I FEEL like eating something.. not whether I SHOULD or should not. It works to reduce the stress around eating.

Personally, I HATE when my mother asks me if I should avoid eating something because of my UC. And I'm in my 30s.

I've been anemic a few times and with a normal-ish diet, it has always resolved itself pretty quickly. See if your daughter can get back to eating what she likes and that might do the trick.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

Posted 2/2/2008 6:44 AM (GMT -7)
My iron levels were very low for six months. during this time I could not tolerate any iron supplements. I dunno why but I found a supplement that worked. I take a double dose of it daily and I drink a liquid iron supplement. It's amazing how better I feel. My evergy is back and my appetite is brilliant. Of all the meds and supplements I've taken iron therapy has helped me the most.

And whilst I accept that iron can't directly help UC I believe that if your iron levels are low your body struggles to heal itself as it cant supply oxygen to your colon in an efficient way. I believe that iron therapy indirectly helps your colon to heal
800 mg Asacol a day

500 mg Asacol suppository now and then!

Fibre supplement, Iron supplment,Probioitcs

Balanced Diet, Reduced Stress

"There is no greater tragedy in life than doing nothing for fear of doing too little. May you live all the days of your life."

 

 

 

 

 

 

Posted 2/2/2008 7:26 AM (GMT -7)
My son went to a nutritionist, who recommended no wheat and dairy also.  One week into that, he could not hold his head up.  I called the guy and said we could not do that right now, and he said to get his colon "calmed down", and then we could try again. He is trying to rule out any type of food allergy.  Your daughter may need to let the strict diet go, eat what she wants, and get her strength up. Food is the one thing that makes my son happy.  He is figuring out which foods work for him, and which don't.  I let him make those choices.  He is 17.  He realizes I am on his team, and not neccesarily the captain.  We are in this together.  Hang in there.
UC Mom

Son diagnosed 10, 2006 at age 15

12 asacol daily

Culturelle Probiotic

Omega 3

Multi Vitamin

Posted 2/2/2008 8:47 AM (GMT -7)

When I was anemic I had trouble with the pill form of iron so I picked up a bottle of liquid iron from the health food store.  I don't remember the brand but I think it was German.  It tasted like the smell of rust but it was better tolerated than the pills.  It can be mixed in beverages to mask the taste.

Sue

dx proctitis in 1987

dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Posted 2/2/2008 9:38 AM (GMT -7)
PLEASE, I can only agree with what the others have said. A good multivitamin will give her the full daily dose of iron, plus folic acid. Taken with food it should be tolerable.

With a low-carb, limited meat diet, where is she getting her proteins and calories from? If you're depending on fat for that, it's the worst possible thing. High-fat foods are not tolerated by almost all of us here. Please, I'm begging, let her eat whatever she can tolerate at this time. Your frantic need to get her to stop bleeding and going so often puts a burden on her to meet your needs. I know you try not to let her see, but believe me, she knows.

Your love for your daughter is unquestionable. Your devotion and support are clear. But just as in so many things children go through, you can't do this for her. For her own mental health, she needs to start educating herself on the condition and managing her life and health for herself. Your role at this point is to support her in whatever she decides.

I know you want to help and you're beside yourself with fear, but the sheer number of factors you're changing all at the same time could very well make her worse instead of better.

Old Hat, please remember that we're here to support. All of us deal with this issue in our own ways, neither right nor wrong. You have so much helpful information to share with all of us.
Judy

 

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine

Colazal,  Remicade, Nature's Way Primadophilus Reuteri.

In remission since April, 2006. Remicade has been my wonder drug.

 

Co-Moderator UC Forum


Posted 2/2/2008 10:09 AM (GMT -7)
PLEASE. The severity of my symptoms has reduced significantly since I began following a low-carb, low-gluten, low-dairy diet.  So if that ends up working for your daughter, then go for it.

When it comes to diet, everyone has strong personal opinions about what to eat, but until someone finds a diet that is proven to work, they should not put down someone else's efforts (even though I'm sure they mean well for your daughter).  However, though desperate times do call for desperate measures, you don't want to make the diet too difficult or unpleasant for your daughter, so try to keep a fine balance between what's allowed and what's restricted.  I would strongly advice you to get in touch with a nutrionist to help put together a diet/recipes that make sure your daughter's getting enough calories and necessary nutrients.

I began taking iron supplements a few weeks back and take 1 with my evening meal.  I'm taking 'slow-fe' once a day and there's another brand called 'niferex' which was also recommended by my GI specialist.  If your daughter's doctor doesn't want her taking iron supplements, has he mentioned taking an iron injection instead? I've not had one, but read about others on the forum taking them to boost their iron levels.  You could also try juicing vegetables (such as spinach) and adding that to freshly squeezed carrot juice.

All the best!

Rio, 31 yr old male - diagnosed with UC in 07/2006.

Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.

07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.

Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.

11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)

12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone 60mg - taper.

Post Edited (Rio in Maryland) : 2/2/2008 10:28:52 AM (GMT-7)

Posted 2/2/2008 10:33 AM (GMT -7)
I don't normally post in this forum but the iron discussion perked my interest since i am suffering with that right now, not for the same reasons given but thought I would tell you the non-pill iron that has worked wonders for me and is non-constipating and comes from plant and fruit sources. I am not trying to peddle this stuff, you can get it from any health food store its called Floradix. Its liquid, you stick in juice twice a day. I've been taking it with my pregnancy (and everyone knows how sensitive your tummy and digestion is while prego!) and it might work well for people as its very gentle. (I know some others mentioned liquid, so thought I would give a name of a good one that i have found that works :)
HealingWell.com Moderator for HIV/AIDS Forum

HIV/AIDS and HepC Education/Prevention Coordinator in Canada

Posted 2/2/2008 1:21 PM (GMT -7)
Many gastros do not want IBD patients to take oral iron supplements because the mineral can clump in the intestines, causing more discomfort. I agree with Judilyn's post; she is giving excellent overall advice. Let me add here in my own defense, though I've mentioned it before, after I was diagnosed with UC in younger adulthood, my mother became convinced that I was really suffering from toxic shock syndrome. Therefore, I get especially concerned when it appears that an IBD patient is being subjected to unwarranted interference with appropriate treatment that is based on the scientific method. Supplements of one kind or another may help reduce symptoms to varying degrees, but are unlikely to put a UCer into real remission. From my experience fighting off severe left-sided flares, I believe that eating as balanced a diet as comfortably possible + taking multivitamin daily & extra folic acid (important for rebuilding damaged tissue) on my gastro's Rx enabled me to tolerate the anti-inflammatory meds & overcome their side effects. (Including Pred.) Without adequate food intake/appropriate supplementation to good nutrition a UCer will lack the strength needed to progress, period. That means extra calorie consumption, not major limitations of basic food elements. What is a good natural source of iron? : spinach, liver! These can be prepared in appetizing ways & eaten in small amounts to be sure they are tolerated. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 2/2/2008 3:09 PM (GMT -7)
Understood, Old Hat, we all carry baggage. I'm sorry you went through that, but I know you understand that scolding isn't helpful. Thanks for all the great insight you contribute to this forum.
Judy

 

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine

Colazal,  Remicade, Nature's Way Primadophilus Reuteri.

In remission since April, 2006. Remicade has been my wonder drug.

 

Co-Moderator UC Forum


Posted 2/2/2008 3:27 PM (GMT -7)
Please,

You are doing very well for your daughter. I think your concern shines through. Each case is different and needs to be treated careful. This site is great for advice but be careful with who's advice you buy. Advice after all is just a form of of nostalgia. I totally agree with Judilyn. A bit too much inappropriate scolding on here at times.

Experiment. I found a way of boosting my iron levels after 6 months. It took time but I'm glad I kept at it.

D
800 mg Asacol a day

500 mg Asacol suppository now and then!

Fibre supplement, Iron supplment,Probioitcs

Balanced Diet, Reduced Stress

"There is no greater tragedy in life than doing nothing for fear of doing too little. May you live all the days of your life."

 

 

 

 

 

 

Posted 2/2/2008 5:23 PM (GMT -7)
PLEASE - I ran across a document from Australia's Queensland Health, the government health body for the state I live in that seems to give a good rounded list of the foods that are stressful and less stressful on the colon. Thought you might be interested in this one.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.

Posted 2/2/2008 9:25 PM (GMT -7)
My GI just told me I was slightly anemic the other day and he suggested a multi-vitamin with iron. I now take Centrium A-Z.

http://www.dietitian.com/iron.html (the part below is suggestions from this website about what foods to eat if you are anemic due to low iron.)

"Buffalo, venison, elk and most other wild game is lower in fat than beef, veal, pork or lamb.

If you choose not to eat meat, I would suggest you include dark green, leafy vegetables and whole cereal grains in your daily diet. You should also look at iron fortified cereals to supplement iron in your diet.

Vegetarians should eat dark green leafy vegetables, broccoli, legumes, yeast leavened whole grain breads, iron-enriched pasta, rice and cereal and meat analogs which are high in iron. Unfortunately, the iron in these foods is not as absorbable as the iron in meat.

But foods rich in Vitamin C (papaya, orange, cantaloupe, broccoli, brussel sprouts, raw green peppers, grapefruit, strawberries, etc.) can be as effective as meat meals in improving iron absorption."
Age 17
Diagnosed September '01
Remission since July '02

Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)

Posted 2/3/2008 7:06 AM (GMT -7)
thank you all for the reply to the iron question-
let me assure you that i am not sitting here driving the cart, i'm just giving suggestions on where to steer.
if anyone remembers my daughter went back to school after christmas break for winter session and in 2 weeks she was home again with a lot of bleeding and d that seemed to be calming down before going back to school coming under control-due to medicine and i'm sure diet limitations. the only ones that i kind of pushed were dairy and the red meat,and bread
after being home for 2 weeks the symptoms are under control -no blood and less frequency and urgency -since the 6mp was only added last week i have to believe that it is the attempt to limit carbs and the other things mentioned.
as far as posting herself she is not interested, she finds information believe me-she wants to know when her hair will begin to fal from the 6mp- and has discovered 2 friends that have uc or chrons and is sharing with them. we are trying to get her in shape to go back to school for the spring session-next week- as that is her dream-she has engaged a hypnotost to help her through periods of stress and help her deal with the diiscomfrot of pain and bloating-and urgency -should she be stuck in a traffic jam, and her long term plan is to spend the summer working and living in manhattan and go abroad to Australia, come one year from now.
so there you have it hardly a control freak, i want to help her acheive her goals, and she is participating in a big way.
oh i forgot to say that she had been taking a multivitamin -chewable centrum and took herself off it- i think she can look at something now and know it's going to hurt.
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily
chewable vitamin
hydrocortisone enema at bed time 6mp50

Posted 2/3/2008 10:24 AM (GMT -7)
I'm so glad she's feeling better, PLEASE. I hope she's able to achieve her goal of returning to school. Sending positive thoughts her way.
Judy

 

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine

Colazal,  Remicade, Nature's Way Primadophilus Reuteri.

In remission since April, 2006. Remicade has been my wonder drug.

 

Co-Moderator UC Forum


Posted 2/3/2008 11:01 AM (GMT -7)
thank you Judy-you put so much time into thhis and i appreciate knowing you are there. i know sometimes my posts are long and start to lose the thought but you seem to know what i was saying.-thanks
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily
chewable vitamin
hydrocortisone enema at bed time 6mp50

Posted 2/3/2008 12:14 PM (GMT -7)
Regarding iron supplements, can anyone in the UK recommend a good one. i have tried a couple of iron tablets which both were horrid to take. Any suggestions ?????

Diagnosed May 2005- left sided UC.Diagnosed with iritis in my Right eye March 2007
On Pentasa 8 tabs a day

Also on Pentasa enemas one daily to treat current flare.

Plus Aloe vera, probiotics, multi vits, turmeric,bromelain.

Posted 2/3/2008 1:03 PM (GMT -7)
I live in Ireland. I take Galfer iorn tablets and I drink Spatone iron supplements. My body torelates both excellently after rejecting all other iron supplements!

D
800 mg Asacol a day

500 mg Asacol suppository now and then!

Fibre supplement, Iron supplment,Probioitcs

Balanced Diet, Reduced Stress

"There is no greater tragedy in life than doing nothing for fear of doing too little. May you live all the days of your life."

 

 

 

 

 

 

Posted 2/3/2008 5:03 PM (GMT -7)
I'm surprised no one has mentioned iron infusions. It's the best way to get iron supplementation without the fear of gut irritation from oral iron supplements or foods that aren't well tolerated. My GI referred me to a hematologist for the infusions. They got me back on track and continue to monitor my levels every six months to a year.
Diagnosed with ulcerative colitis spring 1999.

 

Therapeutic dose sulfasalazine.

Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.

 

 

Posted 2/4/2008 9:46 AM (GMT -7)
PLEASE - Question... did your daughter's Dr. say why no iron supplements? I am iron-deficient anemic, and the first thing my GI did was put my on iron supplements. I take Slow-FE, which is very easy on the stomach and doesn't cause a problem for me. He said if I can't bring the iron up with the pills, I will need to have an iron infusion (after I deliver this baby). I'm just curious as to why your daughter's GI said no to the iron supplements, as it is different advice from what I am getting.

Also, regarding the iron and the daily vitamin. It is very, very important that your daughter take a daily multi-vitamin with this disease. That is the first thing my GI told me when I was diagnosed, and I have been taking one every day ever since. Right now, because I am pregnant, I take a prenatal, but before I was pregnant, I took Flinstones chewables with iron. I know that sounds crazy, but it is true! Adults can take two Flinstones chewables a day and receive the vitamins they need, plus some extra iron if you choose the one with iron in it. My GI said it was a good way to go... and my OB even agreed with it as an option if I couldn't tolerate a prenatal. If your daughter is having trouble with vitamins, maybe give the Flinstones a try.
Current Medications:

- Asacol (4 pills, 3x per day)

- Rowasa (1 enema daily, as needed)

- Folic Acid (1 mg, 1x per day)

- Calcium (600 mg, 2x per day)

- Prenatal Vitamin (1x per day)

- Iron (2x per day)

Posted 2/4/2008 12:51 PM (GMT -7)
Flinstones vitamins have artificial sweeteners in them so something to consider for anyone wanting to avoid them.

q

*Heather*Status: mini flare Dec 28... tapered to every second night

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals/supplements 

~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally

~multi-digestive enzymes as needed ....bromelain 1 - 2x daily

~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Posted 2/4/2008 2:59 PM (GMT -7)
"Total" cereal.
Dx Left-sided UC Dec. 2006
Currently:
Azathioprine 200mg/day
Prednisone 2.5; 7.5; 10/7.5mg(trying to taper-started at 60 6/1)
Lialda 2/day
Multivitamin, B complex vit., fish oil, calcium, fiber supplement, probiotic

Posted 2/5/2008 8:31 AM (GMT -7)
Slow-FE worked for me, as well, when other iron supplements didn't. I found Centrum to be too harsh for my system, but can tolerate Forvia quite well. They have a chewable as well - and it dissolves really fast - doesn't leave the super gritty feeling that I get from Flinstones or the Centrum chewables.

I'm very glad to hear that your daughter has found friend with UC/Crohn's. That kind of support is wonderful!
Pan-colitis and GERD diagnosed May 2003

Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic

Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.

Co-Mod for the UC forum

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