Long Term UC person - perspective please ?

Welcome to the board! I'm sure you will get many responses to your questions.

1. UC is not predictable. There is no way to know whether your patterns will ultimately lead to surgery. Most who opted for surgery did so because medication no longer worked for them. It seems that in your case medication does work for you and gives you periods of remission. Steroidal remission is okay as long as treatment is under 4 months. After that the patient is considered steroid dependent (not a good place to be). Surgery is needed in 20-30% of UC patients meaning that the majority of UC patients will not need surgery.

2. Steroid treatment may or may not fail, again there is no way to know nor have I ever seen documentation on this. Steroids should never be considered a maintenance drug or used for more than 4 months. If you are able to gain remission with a short term of steroids I don't think there is much harm in that BUT I would ask for a base line bone density test and do make sure you are getting your eyes examined every year and let all your doctors know about the ocassional steroid use. The long term side effects from prednisone can be devastating even with short term treatment. Be cautious and be aware.

3. Steroids works for most people, the problem is most people rely on them for long term (more than 4 months). Steroids worked for me but after being on them for 2 years I feared the long term side effects more than I feared surgery. I opted for surgery. Steroids might have kept me functioning for many years (who knows?) but I came to the conclusion that I would never be able to get off of them and I didn't want to take the chance of damage.


Sue

I'm different, have always "smoldered" and flared but avoided any hospitalizations (perhaps out of stubborness) except for once for anemia, long ago. Sometimes I wonder if I should have had surgery a long time ago.
But am doing better now than ever without gluten.
Do you up your asacol dose too when you feel a flare coming on? Less awful than pred.

Sounds similar to what i have had in the past. Ya no worries sounds like your UC is just as unprodictable as being struck by lightning. You never quite know when a flair is done or not. o.0

Adam,

I suspect this is the challenge, making sure it does get on top of you when your hit but don;t neglect yourself. Problem is this IS a disease and its with you for life. I've had a good quality of life from 20-37 , I play sport worked hard, enjoyed a beer with the guys but be careful of the flare-up's you need to nip them in the bud. I could even be bleeding and have normal motions with no pain but if your colon gets diseased and starts to go down hill arresting this can be hard to stop. My only regret is not sticking to the ASA's before. I will from now on. I'm hoping to hear from others who have suffered like us but have continued to maintain geneal good health through maintenance and regular monitoring. That's the other thing, go for a scope as often as recommended. I'm > 10yrs now so I go once a year, like clockwork. I went in June and was perfect.....now in hospital on Day 7 of IV Cortisteroids with heavinly inflammed left sided UC. Progressing well though and will move to Oral tomorrow, out Friday and then its reduction and making sure I stay well...............HOPEFULLY !!!!!!!

Princesa- I think it's fantastic that you have done so well over the years. I had a long 10 year, med free remission once (it did take two years of trying to get off pred up and down then, and finally off)- not even with the special (low carb SCD) diet I now follow without remission. IBD in general is a weird disease- you can do nothing and go into full remission, or do everything right- including natural healing and stress reduction on top of using the official heavy hitters- and still go downhill. I for example have done everything under the sun since the long remission ended- TCM, SCD, low carb SCD, helminths (TSO and hookworm), vit E enemas, DMSO, melatonin, the nicotine patch, all sorts of probiotics, the list goes on and on... and still I can't get a meaningful remission or get off pred for long. But many of them- notably dietary change, probiotics, and TSO, have all helped.... just not enough. It doesn't help of course that some of us are essentially allergic to 5ASA drugs, which are a mainstay for maintenance. Anyway, I am not criticizing you at all, nor complaining, I am just saying that some people can get wondrous results from some "non-medical" approaches, others will get a little bit of benefit, and others get little to none. It's certainly worth trying in all cases. Remi is probably my last hope, though before I resort to the knife, I'll likely try a couple things I haven't yet, such as fecal bacteriotherapy.

Probiotic, I'm sorry to hear you're still struggling. I know you're not asking for advice from me, but after scanning your sig, I thought I'd mention I, too, tried Primal Defense and after a week or so of seemingly feeling better, I began to feel much worse. Symptoms improved after I got off it. My guess was the wheatgrass disagreed with me since I seem to be gluten sensitive. However, I later heard Natasha Trenev talk about soil based organisms as being unsafe - in her opinion as a reknowned probiotic expert - because long-term effects hadn't been studied and because they are "spore formers" and once the spores are in your body, they are difficult, if not impossible to eradicate. Just something to consider as you continue to experiment.

For me personally, I reject the mindset that we have no control over IBD. I also reject that there's nothing we can do but stay on our medications until we get ill enough for surgery. Research (and common sense) tells us there is much we can do to restore healthy ecological gut balance, reduce inflammation and aid the natural healing of the gut. It can be a discouraging, time-consuming process and there is no magic formula/dosage that works for everyone, but I do believe it's in our power to at least greatly reduce our discomfort and improve our health. There were many times in the first couple of years I wanted to give up and I certainly felt plenty sorry for myself, but I'm glad something caused me to keep searching, keep studying, keep trying and not accept my doctor's life sentence of misery.

FWIW, Jini Patel Thompson recommends Natren's powdered Bifido Factor as the safest probiotic to try if you feel you have a lot of inflammation and may be irritated by other probiotic formulas.

Glad to hear the remicade is providing some relief.