Tiffany wrote:

---

Thanks for taking the time to explain it throughly.  Now I understand what it really is.  That has to really suck, literally! =(  What are the options to "fix" that?  Only meds?  Or do you have to change your diet?  surgery isnt a option?   What causes/triggers it? (in your situation besides stress)

---

Well, there is no cure for it. (or any autoimmune disease)  The goal is to manage it, get people into remission and keep them there.  There are a series of medical options, depending on the severity of one's disease.  There are oral meds, usually they start with non-steroidal anti-inflammatory meds.  I take one of those, but more to cut down on the risk of cancer (there is an increased risk for most people with UC of developing colon cancer after they have had the disease for a long time, and the Humira I am on also increases my risks of cancers).  They help, but marginally.  Then there are rectals-some steroid and some the NSAIDs (NOT like ibuprofen though, which can cause bleeding and is not recommended for people with UC).  These actually can be very beneficial because they deposit medication directly to the inflamed areas.  These usually come in the form of foams, suppositories or retention enemas.  Then there are oral steroids like prednisone, which work by taking over your adrenal gland function and giving your body large amounts of synthetic cortisol.  Those help, but because they basically keep your body in that "stress" mode, they have some very damaging effects.  There are also immunosuppressing drugs like Imuran, which suppress the entire immune system, thus reducing the body's ability to attack the colon.  Then there are immune blocking meds like Remicade and Humira, which work to block a protein called TNF, which people with autoimmune diseases generally have too much of.  This is why those meds are helpful for people with a variety of AI diseases.  But they have a lot of risks involved, including dramatically higher risks of some cancers as well as many other frightening things.  This class of drug does seem to be very successful, however many people build antibodies to them, so they slowly lose effectiveness over time, as Humira is for me, and once you go off of them, you can't go back on-they won't work anymore for most.

Surgery isn't something I consider and option for ME personally.  It is an option for many people, and some call it a cure for UC, though I hesitate to call it a cure anymore than amputation is a cure for gangrene.  But for most people who have surgery (they have to have had a pretty severe disease to warrant it), their lives are much better as a result.  That involves removing the colon completely.  Some people opt for a permanent bag or ileostomy.  Most opt for what they call a j-pouch, which involves taking the bottom portion of your small intestine and creating a pouch that functions much like your colon would.  But if someone has Crohns Colitis or Crohns AND Colitis, then there is a high chance of the pouch or entire small intestine being inflamed and winding up back on meds and such.  And from what I understand, Crohns can be much more difficult to manage than UC.  So since my GI feels there is a definite chance I have a combo of the two diseases, I have scratched that off my list.  I am not interested at this point in living with a bag, or going through an extensive surgery just to end up back on meds with crohns.

Diet is tricky-for some it is key, for others it does nothing.  Unlike Crohns, which often responds to bowel rest and modified diet, UC doesn't always.  Some peopl find relief by changing diet, but most of those people have sensitivities to other foods.  For me personally, diet plays very little role.  When I am flaring, I can't tolerate a lot of things I normally can, just because they irritate my already inflamed colon, but food is not a trigger or a fix for me.

I have a genetic component in that my dad has another AI disease, so that coupled with overuse of antibiotics are what triggered the onset of my disease.  I tend to flare at the same general times every year, and the main triggers for me are stress, illness and antibiotics.  Only one of those things have I managed to really control.  The hormone fluctuations during AF also cause me problems, as they do with many, but usually it is just during my period and then it eases up.  Since I am currently in a flare, however, it just makes things worse.  But my triggers are not the same as other people's triggers.  Same way that the onset of the disease is triggered very differently for people.  We actually have a couple of parents on my UC board who have YOUNG kids (think diagnosed with UC at our kids' ages-by colonoscopy), there are some whose parents or siblings have it and they do too, some who have no relatives with it or other AI disease but developed it anyway-there is a lot of diversity amongst the group.  I don't think they really have much of a grasp of why it happens or how to fix it, so at this point, management is the goal.

I hope I have answered your questions!!  It has taken me almost 2 years to learn all of this, and I still have a lot to learn about this disease.  It is very draining, but then I was on my UC board earlier and one woman who is 28 and has a 9 month old boy is in the hospital for maybe the 4th or 5th time since her son was born, trying to have her surgeries fixed.  Her pouch leaked through to her vagina, she had stomach acid leaking through there and said it was the worst pain she had ever felt.  She is back on the bag again and really suffering and hasn't even seen her baby in 2 weeks.  Another mom almost crashed getting sedation for a sigmoidoscopy!  So I am feeling like my lot in life isn't so bad right now-it isn't easy, but there is always someone suffering more.

a_mastermom wrote:

---

Supa, how awful! I will be keeping you in my thoughts. Can you parents come out to help?

---

My parents are awesome-they help out as often as they can.  So far I have been able to manage with the girls-just not anything extra.  But I know I can call on them anytime I need them and they will come over.  I am very very lucky for that.