Vitamin D question and more...

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UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 3/20/2008 10:38 PM (GMT -6)   
My husband's doctor wants him to take an over the counter Vitamin D supplement. He is slightly low on this vitamin. Any suggestions of a good one?


Also, I am very concerned...my husband(32 yrs. old) has been diagnosed with pancolitis since May 2007, until now he has not gone into remission. He has tried predisone, suppositories, currently he's taking Humira and has been on 12 pills/day of Colazal since the beginning of his diagnosis. lt seems the stronger meds work for a while and then his body gets used to the drug, but then again who knows with this disease, it could be something he ate too. His GI did tell him that he has a stubborn case of UC...he's just not going into remission. Any similar experiences, suggestions, alternative meds, that anyone can suggest?

Last question, how do you UC spouses handle this disease since it comes with a lot of mood swings/depression...this disease is starting to affect our marriage...I want to be more positive, but it is getting depressing for me also(sorry to sound so selfish)...I just feel alone and that nobody can understand...everyone just treats it like an upset stomach...it's extremely frustrating. Thanks for listening.

GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 3/20/2008 10:47 PM (GMT -6)   
I had a stubborn case of pancolitis too. It took me a little over a year to get in remission, and that was with Remicade.
As for how to handle the depression and moodswings, I guess all I can say is to try to be patient for the time being. Hopefully the humira will kick in and he will be in so much better shape mentally.
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
12th Remicade infusion End of March


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 3/21/2008 2:37 AM (GMT -6)   
A doctor recently told me about a website for ordering vitamin D: www.vitd3.com
I have not looked into it yet, but I trust this doctor's opinion since she's very wary of unnecessary meds/supplements.

But I would think that any of the "accepted" over the counter vitamin brands would be ok. (Nature's Way is one, I believe.)

On the other issue of stubborn UC flare --- Has your husband tried any rectal meds other than suppositories? The oral meds alone are probably not enough if he's not gone into remission. Not everyone responds to the 5ASA suppositories. They do nothing for me (or worse, make me feel bad) but my UC always responds to Cortifoam. Even with pancolitis, a rectal med can do something to help. Someone just posted about that in the last month -- how against the intuition that her colitis was too far up to respond to rectal meds, she was able to see a vast improvement with consistent use.

For dealing -- that's definitely a tough one. I can't imagine how I would be in role you are in. Don't feel bad at all for thinking of yourself. It's important for both of you to figure out how to deal with this together. Just because you aren't the one with UC doesn't mean that you have to be a saint all the time! Have you asked your husband whether he likes the kind of support you offer? Does he want you to be involved? Does he want you to ask him how he is or ignore it? He might not even have a good sense of the ways in which he wants you to be supportive.

Hopefully some of the other UC spouses here will have some advice to offer.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 3/22/2008 12:23 AM (GMT -6)   
Thank you both for your responses.

James what finally put you into remission, would u say it was all b/c of remicade?

Julee70, thanks for the tip about Cortifoam. I will tell my husband to ask his doc. about it. Actually, the mesalamine suppository did make it worse for my husband as it did to you. This may be a dumb question, but is 5ASA the same thing as mesalamine?

Thanks.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/22/2008 8:47 AM (GMT -6)   
UC spouse, it took almost five years for me to get into full remission. I can tell you that I felt like I had no control over my life and I was a burden to my husband. I at one point decided he was probably sick to death of hearing about my condition and I didn't want him to see me as just a walking disease, so I stopped telling him how sick I was. When I nearly passed out in the bathroom one day, he was very angry with me. He said "How can I help you if you don't tell me what's going on?" It's just hard, and I'm sure it's exponentially harder for a man because men feel they are the providers and protectors for their families.

I also recommend sitting down, talking about how you can best help him, opening communication lines and feelings. I encourage you to keep your own activities. Having a social group outside the home to spend some time with can be a big help. People you don't have to talk about UC to, so you can just be "normal" for a few hours. In some ways it's harder for you than your husband, because you just have to watch while someone you love suffers. You can really lose yourself in the process, and that won't help anyone.
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


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 3/22/2008 9:43 AM (GMT -6)   
Hi UC Spouse,

Yes, 5ASA and mesalamine are the same. 5ASA refers to all the drugs of the same type -- they are the Asacol, Colazol, DiPentum, etc. drugs. The rectal meds of the same type in the US are Rowasa and Canasa -- either in the enema or suppository form. (They have a foam form outside of the US.)

Cortifoam is a steroid foam and really easy to use and generally easy to keep in. It usually doesn't make people run to the bathroom right away the way the suppositories or enemas can. Sure, it's steroids, but the absorption amount is far less than oral steroids. And I think it does a great job of stopping bleeding. Also, for people who generally just "blow off" using rectal meds because it's a yucky thought, the foam applicator is simple. (You can use it standing up and it takes all of 2 seconds.)

There are also steroid enemas, but I'm a big fan of the foam. Hm, that might be something to add to the T-shirt discussion. I can suddenly see myself in a shirt that says "Fan of the Foam"!

This might be a strange question but -- if the Canasa made him worse and Colazol is the same type of med, is it possible that the Colazal is keeping him from remission? Some people are just sensitive to the 5ASA drugs and they don't work for us. Not to throw another big question out there, but it's maybe something to ask the doctor about. I could be completely off base, but it's worth questioning everything if the treatment isn't working. Do you trust this doctor to be really knowledgeable? If it's been nearly a year without remission, maybe you need a second opinion about a different approach. There's no harm in getting more info from another doctor.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 3/22/2008 3:34 PM (GMT -6)   
Back on the subject of vitamin D, Centrum is a reliable brand. Your husband might benefit from Forvia vitamins, which include D & are especially formulated for IBD patients. Several members writing to this site report helpful results from taking them, including forum moderators. Julee70 is definitely giving you good advice re Cortifoam to speed healing in the rectum, and also consideration of 5-ASA meds as possible irritants. 12 Colazal daily is twice the daily dose recommended by NIH at the conclusion of Phase 2 clinical trials for the drug last yr. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 3/22/2008 7:37 PM (GMT -6)   
My most recent flare lasted over 2 years. My GI had me on asacol and prednisone. While I was on the prednisone, things were great. Once I came off the prednisone, it was bad again. The asacol wasn't doing a thing for me. I asked my GI to put me on Azulfidine and that has been working very well for me. In remission once again, for the first time in over 2 years. Also, I am doing Rowasa enemas every third night. (started out every night, then tapered from there, hopefully I'll be able to stop them, but if not, hey..........if they help, I can deal with them.) Perhaps your husband may want to ask about the azulfidine if the other meds aren't helping at all...............GOod Luck to the both of you.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 3rd night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............

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