how do you manage your UC?

My husband has just been diagnosed with UC. We are still in the hospital receiving treatment. His entire descending colon and left side of the transverse are inflamed. We briefly discussed management therapy with the doctor, wanting to know how this will be effecting our daily life. He said my husband may have to receive bi-weekly injections for life. From what I've been reading this seems unrealistic, and that oral and topical therapies seem to be more of the norm. Any insight?

Sounds as if they want him to do Humira. His UC must be pretty bad if they want to start him off on a biologic drug. I would suggest doing lots and lots of homework and research on UC. There are many, many different treatments for it. Everyone has different degrees of severity of the disease so no one treatment is right for everyone. I had an extremely severe case of UC and had to have surgery. Ask his doctors TONS of questions since you are new to the diagnosis. Best of luck to your hubby.

utopia03rh said...
My husband has just been diagnosed with UC. We are still in the hospital receiving treatment. His entire descending colon and left side of the transverse are inflamed. We briefly discussed management therapy with the doctor, wanting to know how this will be effecting our daily life. He said my husband may have to receive bi-weekly injections for life. From what I've been reading this seems unrealistic, and that oral and topical therapies seem to be more of the norm. Any insight?

I think you'll find as you learn more about this disease that there are many sufferers who would love to manage their UC with only bi-weekly injections. Unfortunately it is all too "realistic."

Do you know what treatments your husband has received in the hospital thus far? I agree with previous posters that his condition was probably pretty severe if they are talking about jumping straight to Humira. Personally I am a believer in the "top down" approach, which is jumping straight to stronger meds in the case of a severe flare that seems refractory to safer and milder treatments like 5ASAs (these are the oral and topical meds called names like Asacol, Lialda, Apriso, Pentasa, Rowasa, Canasa, etc). UC flares tend to snowball and it seems that often a flare that could have been handled by a milder drug initially will progress to a point where only the big guns will work, if anything. Basically you don't want to dick around trying mild drugs on a severe flare, wasting time and getting sicker. But as you'll find, many disagree with me (patients and doctors both).

If possible you want to seek out a GI doc who specializes in IBD. Most GIs do not treat a lot of cases of UC and will pretty much go down a checklist of medicines until they find one that works. Sometimes they don't. A lot of the time you end up suffering in the process. You want a doctor who has treated a lot of cases of UC and knows how to customize a treatment to the patient and their symptoms.

Best of luck.

mattcs said...
bi-weekly? That doesn't sound like Humira, I thought that was bi-monthly.

Biweekly can mean either twice a week or once every two weeks.

Utopia,

Welcome to the forum.

Sorry about your husband's diagnosis.

UC sucks! No 2 ways about that.

Seems the new protocol for doctors is to START right off with the biologics; I've heard lots of stories now from people being given the hard push for the big guns, without even a mention of trying the mesalamines, prednisone, rectal drugs... Big pharma at it again ;(

Anyway, I would suggest incorporating some natural things too, so that he'll be able to get his body back in good shape after the biologics, and that would mean IMO, a slew of things: probiotics, checking vitamin d3 levels, slippery elm powder, l-glutamine amino acid, diet modification as in gluten and dairy free, going PALEO is the ideal diet IMO.

If any of this interests you,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

from where i've been and where i'm at now, that seems a bit aggressive -

"for life" ? geez, that's a scary statement - yes, please do some research to get a better feel for what the options are -

good luck to both of you -

food isn't a drug in my book -

and it certainly isn't humira -

whether or not i will have to avoid grains the rest of my life remains to be seen - my hope is that with time away from the things that have given me issues, i can reiintroduce some of the avoidance foods -