Whats the chance I will need my colon removed?

I know people have said that their lives have improved drastically after getting their colon removed because of how harsh their condition is, but there's a few things about mine.

I was diagnosed in 2012. My first flare was very very bad because I could not get a specialist for at least a month to even figure out what was wrong with me, and so it got worse and worse. Eventually I got a specialist and was immediately put on prednisone. Within 1 week my symptoms were gone.

A year later I got another flare, but prednisone quickly helped.

Half a year later (May 2014) I got another flare. This time it lasted 5 weeks rather than the usual 1 week because I tried other options as I had to think about my body for the future as I know the prednisone can seriously mess up things such as my bones and I'm at a high risk for infections when my immune system is so low. But after 5 weeks with no change I took the prednisone, and 1 week later my symptoms were gone.

It is now mid-March 2015 and I am still without symptoms. This time around though I've been taking intensive probiotics along with my usual mezavant prescription.

So the thing is, I'm usually in remission for about a year (we'll see how much longer I can go now that I'm trying probiotics). The question is though, what is the chance I'll need surgery? Is my rarity of flares common? Every time I hear someone with colitis I usually find out they have it very severely and they always say I'm lucky. I feel extremely bad for them though!

Is surgery only recommended for those that have it extremely severe? Is there a possibility I will never need the surgery in life if I only get flare ups at least once a year?

And exactly how horrible would it be that I only need to take prednisone just once a year? I honestly have no idea how much damage a weeks worth of prednisone can do to my body in the future.

Sincerely,

A very curious mind.

I think so much is individual. If you can work or go to school, than no, if you are constantly hospitalized and can't function then maybe.

UC sucks but a year of surgeries and the after math of that should be considered.

Good luck!

about 75 percent of uc patients do not need surgery, only 25 percent do. So, the odds are most certainly in your favor of not needing surgery.

Generally, surgery is for those for whom traditional uc medications have failed. I say generally, as one can choose to have surgery before trying all medications, such as a patient refusing the hardcore biologic medications.

Flaring once a year isn't terrible, but remission often lasts longer than that. What medications and doses are you currently on? Perhaps we can suggest some improvements to your treatment...

Kickboxer, I think your doctor is either delusional or a cockeyed optimist. I'm seeing a lot of people talking about various autoimmune diseases "burning out" over time, but I haven't seen any studies showing this. I sort of think our docs are what burns out, not our disease.

Prednisone is damaging (osteoporosis, type ii diabetes, glaucoma, etc.) when used longterm, such as for a year or more continuously. Some have suggested prednisone looses effectiveness over time. Regardless, you want to use prednisone as infrequently as is possible as prednisone is a rescue medication not an ongoing treatment for uc. Ideally, you should be taking 4.8 grams of mezavant a day, along with either a meslamine suppository (e.g., Canasa) or meslamine enema (e.g., rowasa).

You are young, and the largest predictor of needing colon removal is the number of years with UC. But, there are many other factors; many exceptions.

The data that says 30% lifetime risk is in my opinion outdated because it spans back over 40 years, and many of the earlier cases never had biologics, probiotics, or the quality of scoping patients have today. So I think the lifetime risk is closer to 10%, but this is a guess. However studies that look back only 20 years, find lower than 30% risk.

There is also the wild card of new treatments in the next 20-30 years. Best to be optimistic.

My advice is live your life. Treat you UC. Learn about the disease. Work on the next 10 years, and don't stress too much about the next 30-40 years.

I'm seeing very mixed opinions here thank you all though for the comments / input.

I'm still not really sure how severe exactly taking prednisone once a year is doing to my body.

The consensus from this thread appears to be: don't worry about it now, you are definitely not a candidate for surgery. Honestly I don't think I need surgery either, but I'm wondering how much damage taking prednisone is doing to me if I take it once a year, or if its okay to take it once a year. That is what I'm still unclear about.

Anyone on prednisone (even if it's a course once a year) should have a bone density scan. I would do that if I were you if you haven't had one already.

Sugarcrave said...
I know people have said that their lives have improved drastically after getting their colon removed because of how harsh their condition is, but there's a few things about mine.

I was diagnosed in 2012. My first flare was very very bad because I could not get a specialist for at least a month to even figure out what was wrong with me, and so it got worse and worse. Eventually I got a specialist and was immediately put on prednisone. Within 1 week my symptoms were gone.

A year later I got another flare, but prednisone quickly helped.

Half a year later (May 2014) I got another flare. This time it lasted 5 weeks rather than the usual 1 week because I tried other options as I had to think about my body for the future as I know the prednisone can seriously mess up things such as my bones and I'm at a high risk for infections when my immune system is so low. But after 5 weeks with no change I took the prednisone, and 1 week later my symptoms were gone.

It is now mid-March 2015 and I am still without symptoms. This time around though I've been taking intensive probiotics along with my usual mezavant prescription.

So the thing is, I'm usually in remission for about a year (we'll see how much longer I can go now that I'm trying probiotics). The question is though, what is the chance I'll need surgery? Is my rarity of flares common? Every time I hear someone with colitis I usually find out they have it very severely and they always say I'm lucky. I feel extremely bad for them though!

Is surgery only recommended for those that have it extremely severe? Is there a possibility I will never need the surgery in life if I only get flare ups at least once a year?

And exactly how horrible would it be that I only need to take prednisone just once a year? I honestly have no idea how much damage a weeks worth of prednisone can do to my body in the future.

Sincerely,

A very curious mind.

Sugarcrave, sorry for all your going through. At this point, your doctor should be advising you to make some dietary changes, you would be surprised how much it would help while working with medicine.

Things like fasting during the onset of a flare, avoiding common allergen foods: dairy, nuts, gluten, etc. Not eating too close to bedtime, avoiding sugar, whole grains, sulfurous foods... proper food combining, all of these things are very helpful and surgery is a last resort until one has tried many things.