Question about meds

[tonya_n_ky]

Hey guys. I just started several different meds at around the same time and I feel 100% better so I'm not complainin, lol. But I'm just wondering what each does to make you feel better.
Imuran, Acidphilus, Forvia & Iron is what I'm taking at the moment.
I was taking cholestyromine for the D but I haven't had to drink it in about a week now and I don't have D. It's odd since I have lived with diarrhea every day for 5 yrs now and all of a sudden it's gone. Before I was drinking the cholestyromine faithfully every other day and still was having problems going anywhere. It was a HUGE problem for me. So one (or all) of the meds is working miracles for me. That in itself is making me feel sooo much better. Energy levels are coming up too but I think I can thank the iron for that. Who knows...
Does the Imuran do something to stop the D? I'm babbling I guess but I just wanted to ask.
Also, wanted to say THANKS! to everyone for thier answers to my posts. When I first started posting I felt like death. Now I can honestly say after starting these meds and the acidphilus that I can see some light at the end of the tunnel. SO everyone of you is very much appreciated. :sun: Even if it's just coming on and reading I have learned so much. It's nice to know I have a support system (scattered all over the place but just as important to me). So if someone is down today and ur reading this....Trust me, don't give up and believe in yourself, even if you feel like nobody else believes in u.

 

[Mazen]

Hi Tonya

It's great that you are feeling good. From the things you mentioned you are taking, the only medicine is Imuran. The others are more or less food supplements.

I agree that the combination might work. I wasn't doing very well on meds alone (Pentasa and Imuran); but after I changed my diet and started taking supplements (Multivitamin, fish oil, flax oil, Vit C, Zinc, Magnesium), I'm feeling so much better.

As for the Imuran stopping the D, I don't know as I suffer costipation more than D, but what Imuran does is lessen the immune response so it lessens the inflammation. So the less inflammation, the less D I guess....

 

[tonya_n_ky]

Well either way...something's working, lol. I'm just thankful for it. It's weird how crohn's can cause some to suffer D and for others constipation, and some both. Hope you're well and thanks for your post.

 

[Dekar]

the last time i had D was when i was a child. ever since i was diagnosed with crohns its been pure constipation :O... so strange

 

[ruthymg]

Hi Tonya, glad you're feeling better, have to chat later, haven't chatted for ages it seems lol Just for the record I too suffer with terrible d when I flare, and not so much constipation but still a little.


Ruth

 

[flying4frogs]

How long ago did you start on the new meds?
My GI doc told me that immusuppressive drugs (metholtrexate, Imuran, mp6) takes time to come into full effect (2-6 months).
Glad to see you are feeling so much better, and thats the most inportant thing right now.......

Nelson

 

[tonya_n_ky]

Coming up on a month for the Imuran. That's why I'm not so sure what's helping. I was told the same.

 

[EBH]

hi Tonya-
was is Forvia? I am not familiar with this- is it s a multi-vitamin?
the iron might be making your stools solid as for lots of "normal" people that can constipate. Have you been really anemic before too? If this is the case, just getting iron will make you feel so much better.
Also, have you ever been put on Remicade? This is the best drug in the world as far as making the gut better. So the good news is, if none of the drugs that you are on now work, then you still have Remicade to try.


Elizabeth

 

[tonya_n_ky]

www.forvia.com it's a multi-vitamin made especially for people with Crohn's. I heard of it through another person on the forum and ordered it. It seems to be easy on the belly so far. Yes, I just found out that I was very anemic and also had mono so was feeling awful. I was put on 325 mg of Iron, started the Forvia, and was put on Imuran about a month ago. I just started the acidphilus as well. And I think it's a mixture of all of them is helping. No, I have never had the remicade treatments. I had a bowel resection soon after being diagnosed and then of course felt great and let my health slip, thinking I'd always feel good I guess. And it has slowly went to hell so now I'm climbing back out of the hole I let myself get into. Hopefully what I am taking will keep me at bay for a long long time. If not then I'll look for other options...Thanks for the post and Take Care

 

[Skinsfan1229]

to much to list while sittin in the floor of the hospital hallway, willl be back later to tell! lol

 

[tonya_n_ky]

Skins...hope everythings ok with you (being at the hospital)

My new list , lol
Imuran (125mg a day)
Forvia (Multivitamin) 2 a day
Cholestyromine (was every other day but now as needed)
Iron (325 mg a day)
Acidphilus (2 a day so far before I eat)
Fish Oil (2 twice a day with a meal)
Tizanidine (4mg, I usually cut one in half though as needed before bedtime)

Take Care

 

[GNC Crohn's Man]

Imuran - is an immunosuppresant... It is used to bring your white blood cell count down to a more normal range.. Your doc must do a specfic lab work test though that they have to send off to a special lab in order to determine whither or not your white blood cell count is in the right range for the medicine to work...

FORVIA- "What vitamins and minerals are in FORVIA Tablets?

The two tablet adult daily dose of FORVIA provides the vitamins and minerals most often deficient in Crohn’s and colitis. For a complete listing of each nutrient, click here"

And then the link doesn't work... So I don't have a damned clue what's in that..

Cholestyromine - Pletal (cilostazol) is a quinolinone derivative that inhibits cellular phosphodiesterase (more specific for phosphodiesterase III). So thier inhibiting an enzyme that is used to break down cAMP... Okay whatever floats their boat... I have no clue what the hell affect... Okay after reading up on it it is for claudication...

Claudication is pain in the calf or thigh muscle that occurs after you have walked a certain distance, such as a block or two. The pain stops after you rest for a while. Each time the pain occurs, it takes about the same amount of time for the pain to go away after you stop walking.

So their trying to improve your blood flow so your legs stop hurting? I would ask your doc why the hell your on this...

Yes this probably would have an effect on your energy levels... More than likely you would have a lot more energy since the amount cAMP in your body would be increased... I guess that's why they have you on it...

Iron (325 mg a day) - damn that's a lot of iron.... Normal dosage is 18mg...
You must be severelly anemic (low red blood cell count caused generally by an iron defeciancy or a lack of B-12 in the body)

That much iron is probably what is causing the diarhea to stop... Iron generally constipates most people....

Acidphilus - I need a brand and a name so I can look at the label.... Theirs lots of different kinds of acidphilus some suck some don't...

Fish Oil - again brand and name so I can see the DHA and EPA content... If that is not listed on the product then what your taking is crap... DHA and EPA are the omega 3 fatty acids you want to get in your fish oil...

Tizanidine - Tizanidine acts on the central nervous system (CNS) to produce its muscle relaxant effects. Its actions on the CNS may also cause some of the medicine's side effects. Ahhh a muscle relaxer... Watch your dosage on those and try not to become dependent on them...

 

[GNC Crohn's Man]

I think I answered your questions....

 

[tonya_n_ky]

Thanks Daniel

Hey Daniel,

Here's the info on the Forvia

FORVIA contains the fat-soluble vitamins A, D, E and K in water-miscible form to enable good absorption and utilization. IBD patients are at increased risk for low levels of these vitamins. Vitamin D, important for maintaining bone mass, is supplemented at 2 times the daily Value because it is not optimally absorbed in IBD and may be inhibited by steroids used in the treatment of IBD.
FORVIA contains folic acid, the daily administration of which has been found in a number of studies to be associated with a reduced risk for the development of colorectal cancer or dysplasia in individuals with ulcerative colitis.
FORVIA contains vitamin C and iron in the ratio and amounts shown to increase iron absorption when given together. Iron is provided as ferrous fumarate, which is highly soluble in the gastrointestinal tract, is well-tolerated orally, and was less toxic then ferrous sulfate or ferrous gluconate in laboratory studies.
FORVIA contains 1000 mcg of vitamin B12 (cyanocobalamin). B12 may be poorly absorbed in patients with IBD, particularly in extensive Crohn's disease.
FORVIA contains zinc, important for wound healing and immune function, at 150% of the Daily Value because it may be lost through increased excretion in individuals with IBD.
FORVIA contains calcium diphosphate, a "non-gassy"/non-carbonate form of calcium for improved bone health.
FORVIA does not contain magnesium as an active ingredient because magnesium can promote diarrhea.
FORVIA is lactose-free, and contains no sugars, dyes, artificial sweeteners or flavorings.

The link won't open for me either now so going to type it out for ya...
(These are all from the adult dose- 2 tabs a day)

Vitamin A- 5,000 IU 100% daily value
Vitamin D- 800 IU 200% daily value
Vitamin E- 150 IU 500% daily value
Vitamin K- 80 mcg 100% daily value
Vitamin C- 200 mg 330% daily value
Vitamin B-1- 10 mg 670 % daily value
Vitamin B-2- 10 mg 590% daily value
Vitamin B-6- 10 mg 500% daily value
Vitamin B-12- 1,000mcg 16,670 daily value
Folic Acid- 0.4mg 100% daily value
Niacin- 20 mg 100% daily value
Biotin- 0.3 mg 100% daily value
Pantothenic Acid- 10 mg 100% daily value
Minerals...
Iron- 30 mg 170% daily value
Calcium -200 mg 20% daily value
Zinc- 22.5mg 150% daily value
Selenium- 70mcg 100% daily value
Copper- 2.0mg 100% daily value
Iodine- 150mcg 100% daily value
Manganese - 2.0mg 100% daily value

Personally, I love it. I spoke to my doctor on my last visit because of the 325 mg of iron and the 2cc's of b-12, I wanted to make sure I wasn't taking too much of something. He said that these looked like a great vitamin to be taking, and I trust that. He also told me to pick up a calcium supplement to go with it because the dose of calcium is low in the Forvia.

I am up for bloodwork again this week to check the levels on Imuran. But I haven't had any problems with it this far and think it's doing it's part.


I was put on the Cholestyromine 5 yrs ago after my surgery to help with the diarrhea. My body just laughs at Imodium and spits it out, so to speak, lol. My doctor I had at the time told me it was originally given to patients to help with cholestorol but that a big side effect was constipation so with the Crohn's it would slow the diarrhea. Before I changed to my current drug list, the Cholestyromine was the only thing I took faithfully every other day so that I could have a day in between without being on the toilet all day, the bad part of it is the bloating, it's painful. I haven't drank the Cholestyromine now for about 3 wks though becuase the Big D has slowed with the new things I am taking.

Yes...I was very anemic. I honestly don't think my body absorbs much of anything anymore.

The Acidphilus, I believe you and I talked about on another post somewhere, lol. It's GNC brand. I am up to taking 2 a day 30 minutes before a meal (1 at a time)

The Fish Oil is...432mg EPA and 288mg DHA. I take 2 of these 3 times a day (with a meal). My doctor agreed big time on fish oil benefits. I even told him the tip you told me about freezing them (which works wonderfully). I need to figure out how to keep some extra in my car or purse though so that when I travel I can pop them when needed, lol.

The Tizanidine I don't take often at all, it's just there for when I need it. It's a 4mg tab and I usually cut it in half to get 2mg. because 2 mg does the trick and like you said I don't want to be dependent.

Take Care...and Thanks

 

[EBH]

Tonya
This info on Forvia is amazing! I cannot believe i have not heard of it before. I am definitely going to give it a try. Do you mind if i post this great write up of information of what it is and put it on my health and wellness website (wikihealth)? i am hoping to get more information on supplement and diet, meds and even non-mainstream meds that help people with IBD.

Let me know your thoughts. If you prefer, you can even post it yourself (as it is a wiki, a website that anyone can contribute to), so you can get the credit as a registered user. It would even be a good place to post a link to this Forum so that it can get more exposure.

Hope you are doing well!

 

[GNC Crohn's Man]

Yeah the Forvia does look good if you need the Iron... Men in general do not need extra iron though unless they are anemic... As far as the acidphilus goes the Garden of Life Primal defense is still the best and the primal defense ultra is even better but I'm personally not going to take it unless everything has calmed down in my intestines... I wouldn't recommend anyone to take the acidphulus if you have active flaring because it may cause your symptoms to get worse not better... So if your okay and not having any real problems with inflammation then the acidphulus may be a good matinance supplement but if you have active flaring your body may take it as another invader and it may make your symptoms worse...

Remember your white blood cells are actively attacking your intestines during a flare up due to what they consider to be an infection in the intestinal lining...

But if you have been on the aciduphilus and you think it is helping then stay on it...

Also if your unable to eat vegtables or fruits GNC does have the Maxiumium Greens and Mamiumium Fruit in a pill form now... The Greens I have tried and I haven't had any problems with it digesting... Granted your poop may turn green... The Maxiumum Fruits I have not tried yet.... I'll wait until it goes on sell and then buy some...

http://www.gnc.com/product/index.jsp?productId=2133900&cp=2167112.2109067.2109040&parentPage=family

Huh their isn't a listing for the Fruits in the pill... Granted we just got it in the
store on the last shipment so your local GNC may or may not have any of it in
yet... They will have the powder but dunno if they will have the pill...

 

[GNC Crohn's Man]

Also on the fish oil now GNC has started to add Lemon Flavoring to some of them so you won't have to freeze them... It's a lot easier to just mask the flavor then it is to make them oderless... The enteric coated lemon flavored ones would be your best choice if you hate the fishy taste...

 

[Nancy Lee]

Note to Tonya.

Thanks for telling us about Foriva, Tonya. I've spent the better part of the day trying to track it down here to no avail. Guess I'm going to have to order off their web site. Thanks again~Nancy

 

[tonya_n_ky]

Elizabeth- No problem...post what you wish on wiki. Hope someone finds it and it helps them out. If you decide to try it, let me know how it goes...take care

Daniel- Thanks for the extra info, the maximum fruit and maximum vegetable sounds interesting. I do have probs with some fruits and veggies. Thanks again and take care

Nancy- I hope you got through and found out a way to get them. They are only available online, by mail or over the phone as far as I know. I saw on another post that Janet took Forvia and I asked her about it and then ordered it and shared the thoughts on here so thanks to Janet for the info she gave me on it. As I said up there somewhere, my doctor has put me on a calcium supplement also because the Forvia doesn't have a lot of calcium that us women especially need, so you may want to consider one to go with the Forvia. Take care Nancy

 

[EBH]

hi tonya,
i added additional content to an existing article on crohn's disease and then added an entire article on Forvia (based on their information on their website and from your posting of supplementation percentages on the bottle.) articles posted here:

http://www.wikihealth.com/Dietary_supplements_for_Crohn's_disease
http://www.wikihealth.com/Forvia

i registered the article under crohn's forum member and gave a link to the site in the Talk Page. I hope this helps to drive more users to this forum as well.

If you or anyone else has additional content/ crohn's thoughts to add, please do!

thanks again!

 

[Skinsfan1229]

actually I noticed you were only taking .4mg of folic acid and immuno-modulators/suppresents like immuran deplete your folic acid along with a host of others, so if you get headaches....bring it up to your doctor.