entocort and side effects/anemic

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jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/2/2010 3:44 PM (GMT -7)   
Hello, I'm new to this forum. I have been on intecort for 3 wks now. Doctor prescribed it for 8 wks. I've started to get acne on my face
 Besides that i'm scared to eat anything that would cause a flare up. I had a physics today and needed a cup of coffee and right away my stomach was making noises.Ended up with diarreah, Needless to say I'm going to stop the coffee all together. I"m anemic and i'm so tired. going to school full time to be a diagnostic ultrasound tech. I have a test every week and my clinical sites. What should i drink to have energy????? I get enough sleep, but i guess 8-9 hrs won't cut it.

Ankylos
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 2/2/2010 5:06 PM (GMT -7)   
A suggestion: look into the Specific Carbohydrate Diet if you find your disease is affected by what you eat. The lack of energy takes some time to resolve, and it depends upon the origins of the lack of energy- it can range from B12 deficiency to megaloblastic anemia, and everything in between. Most likely, you will need to get to the point where your intestinal mucosa has healed to the point where it can once again absorb more nutrients than it "lets go," as well as grow new red blood cells with those new nutrients.

Sleep is good, as is nutrition; if you can tolerate them, animal proteins with heme iron (steak, eggs, liver) are very good. Iron supplements should NOT come from salts (iron oxide, iron sulfate), but should be chelated- ideally, they too would come from heme iron, but I can't make any specific recommendations as I've not perused the labels recently. The "wrong" choices of iron will cause pain; food sources have always been safe for me.

jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/2/2010 6:32 PM (GMT -7)   
Thanks for your help. I had a blood transfusion 3 weeks ago, because I am severly anemic. I guess i'm just gonna have to wait and try to eat foods high in iron. DEPRESSING>>>> I want energy so bad!!!... I just started the carrot and redbeet juice. My mom continues to nag me to do it. So I'm doing it to shut her up.

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/2/2010 6:39 PM (GMT -7)   
Like Ankylos suggested, heme iron is the best type of iron to take because it'll interfere the least with your digestion. I took Proferrin (a type of heme iron) with no side effects, and I can't tolerate other iron pills. I have suggested it to others here who are unable to take other iron pills (such as Rider Fan), who have also had success. It is expensive though, it costs about $80 a month. Unfortunately, other than taking iron pills or getting iron shots, it's quite difficult to get energy. I'm severely anemic as well so I feel your pain. If I'm tired, I really try to get in a 2-hour nap after work so that I have enough energy to make it through the evening. Proteins are the best foods for energy, but even then, until you're feeling better, you may have a difficult time absorbing your nutrients anyway so you may have limited success. A lot of people here have B12 deficiencies, not sure if you do or not. I don't, personally, so I can't offer much advice there.

One thing though, coffee most likely isn't the best thing to drink. I would stay away from it if at all possible. If I'm going out for coffee with friends, I just get decaf now and have no problems. Some coffee shops also brew their coffee ridiculously strong which makes the effects that much worse. Coffee stimulates your intestines, so it makes a lot of sense that it would bother you. Last time I had a coffee, I ended up throwing up to the point where I blacked out. Basically, since then I've stopped drinking it, haha. I would also stay away from energy drinks. I actually don't have trouble with soft drinks anymore, but the carbonation does upset my stomach a bit on bad days.

I've been on Entocort as well for 11 months now. Good luck :)

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 2/2/2010 6:48 PM (GMT -7)   
Jes, I was and am kind of like you. Right now my hemoglobin is 11+.
thats amazing for me. I have had 3 Blood transfusions as well. Lowest was 6.5 or so. Ouch.

If you can handle Iron suppliments, Take your entocort first, than take your ferrous sulfate with Vitamin C to get some extra absorption.

If you cant handle iron... Than honestly you may want to try Chicken liver, Well cooked red meat, TOTAL Cereal or Frosted flakes all have good iron amounts.

The best way is to get the Crohn's under control. Ive been anemic my whole life.
I tried getting Infed and another type of iron infusion but it almost killed me. Redlined in the infusion center. Scariest thing ever.

jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/2/2010 7:46 PM (GMT -7)   
Wow, My Rbc count was at 7 and they got it up to 8. It's still very low. Nobody understands me. I feel like people think im just not interested when i am in my clinical rotations. Well, I'm gonna have to look up the heme iron. I have no clue what it is. I"m hoping the entocort helps me. I'm so against medication but i don't want this to get worse. Bread and rice upset my stomach, is that even normal. I just have soup for dinner, and lunch. Oh and my lovely ensure drinks. Along with perishable fruit drinks. I wanna eat, but the thought of it scares me. As I type i hear my stomach rumbling, not of hunger, I just ate. I tried some turkey for protein with nothing else and it's affecting me!!!! I"m so frusturated.......

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/2/2010 8:14 PM (GMT -7)   
What tests have you had done? What symptoms do you have, exactly? And when were you diagnosed? You remind me a lot of myself. I used to not even be able to keep down water (I used to throw up every time I ate/drank). I feel your pain, it sucks when you want to eat and be normal, but it's really hard when you're feeling so sick!

jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/2/2010 9:12 PM (GMT -7)   
well my flare ups are pretty severe. Severe abdominal pain, nausea, diarreah, and vomitting. They don't happen often but when it does i land in the hospital. I just have D today. They did a catscan and no obstruction. Just inflammation. I'm on Pentasa twice a day, Entecort 3 times a day. I just hate the tiredness...... It takes a toll on my body and i honestly just wanna sleep all day. That's all i think about. And on the weekends i make sure i get 13 to 14 hours of sleep... No lie I"m a pro!

Ankylos
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 2/2/2010 10:24 PM (GMT -7)   
Heme iron is iron in blood cells- the iron at the center of the heme molecule (it's quite large- larger than the diagrams you will probably find show it to be) is what binds oxygen, allowing the red blood cells to carry in oxygen to your cells. When your body is fighting an infection, it "hides" the iron in one of a number of forms- mainly ferritin. When there is a bacterial infection, the body "hoards" this iron in an attempt to stem the growth of the organism; unfortunately, this has side effects for the host. Interestingly, both mycobacteria and klebsiella will cause the body to hoard iron in this form.

Once the damage to the mucosa is undone, the iron partition will improve- shedding iron from fettitin and putting it in heme, where it belongs. For me, this took about 7 months- but I put on 13 pounds in the first 3 months of the SCD.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/3/2010 11:11 AM (GMT -7)   

jessaccount22 -
 
I hope the Entocort does the trick for you. Just one quibble -- three times a day? It is supposed to be taken all at once, in the morning. This is not simply a matter of opinion-this is what the manufacturer has recommended. A total of three pills, or 9mg a day, taken all at once. With or without food.
 
Some of your anemia might resolve if the meds help enough, but for the time being you should probably take supplements - Solgar's "Gentle Iron" or any supplement with iron bisglycinate or iron chelate. My daughter has been taking them for years with no side effects, except lower zinc, which we fixed (through trial and error) by having her taken no more than 10 units of zinc, with a meal, two hours after she has taken at least 50 mg iron. 
 
Especially for a pre-menopausal woman, it is nearly impossible to get enough iron from any food or cereal EXCEPT liver.   
 
Which usually means supplements are a must. And, because all foods, meds, and other supplements interfere with iron absorption, the iron needs to be taken only with OJ, at least two hours before and two hours after having any meal, supplement, or med. Taking it in a multivitamin is nearly useless.
 
Most docs are clueless about how to supplement, especially when Crohn's has to be taken into consideration. 
 
If it hasn't been done before, have your zinc and B12 checked, and vitamin D 25 hydroxy, as Crohn's patients are often deficient in all three. Folate could be low, too, especially if you are taking Pentasa.  Low B12 can certainly contribute to fatigue, and you need to have the right mix of zinc, folic acid, and B vitamins for your body to be able to fully utilize the iron. Our bodies are pretty complex, where a deficiency in one area impacts other areas.    
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/3/2010 11:24 AM (GMT -7)   
You sound like you're having a really hard time.  I can't remember how long it takes for Entocort to work, but given that it's a steroid it shouldn't take too long.  Have you ever been on prednisone?  If you don't feel better soon I think you should talk to your GI about getting more aggressive in contoling the disease.
 
I know how you feel, I had 4 blood transfusions in a one year period a while ago.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/3/2010 5:06 PM (GMT -7)   
i think the entocort is working. I blame myself for drinking a cup of coffee. I'm going to make an appt. with doctor to check everything. Iron, b-12, folic acid and zinc. I'm exhausted right now. Feeling better with the tummy, but the tiredness doesn't go away. Thanks for the advice. It has helped. I'm heading to the doctors soon with a list:)

Crohnie4Life
Regular Member


Date Joined Jan 2010
Total Posts : 69
   Posted 2/3/2010 7:15 PM (GMT -7)   
Try IV Iron. It's helped my numbers tremendously! Like you, I have had many transfusions. I definitely feel better because of the iron infusions. They take 3-5 hours. I have an infusion once a month and it really keeps me going. I cannot tolerate iron pills and such. Talk to your gastro about settting up an appointment with a hematologist. Good luck!

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 2/3/2010 8:14 PM (GMT -7)   
I understand the fatigue and am going through it myself right now (for the #rd time ion 5 years) My Iron last year was also 6 but got it up in about 4 weeks by taking iron ferrous glucconate. I've no idea what kind of iron it is but it worked for me. ANKYLOS I'm sure you said something very interesting but I didn't understand a word of it. Could you please explain in plain language for those of us without a degree?


Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/4/2010 7:43 PM (GMT -7)   
omg, i never knew there was such thing as a hematologist. Ferrous glucconate?....So much Info!!! and Heme iron. and then my mothers homemade recipe.
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