Any j-pouchers here whose UC was mostly very very mild?

My UC was pretty tame compared to some. I went 20+ years with it
first on Prednisone but you can't stay on Prednisone forever.
After Prednisone I had really good luck with 6MP.

What forced surgery for me in the end was low grade dysplasia.

It seems like with UC it's going to come down to surgery sooner or
later as the inflammation over the years takes its toll.

I stayed on low dose Prednisone (5mg) for years. I couldn't get off of it completely without flaring up. I'm med free nearly 12 years post surgery!

My UC was mild. Final 4 years seemed symptom free. A course of antibiotics threw me into C-diff w/ toxic mega colon. J-pouch has worked well for me. It's a new normal, but good....

Karen

Thanks! I thought marriage and first home are tough decisions but compared to the surgery one those are cakewalks, for me anyway... Sigh. Thanks though.

@Ted Silver- i see you only just registered here, even though you have had a pouch 20 years? Are you doing badly now or has your pouch been rough for 20 years? This is a nutty forum and hard for me to gage re pouch outcomes as it's a trouble forum- wish it didnt have to exist at all as a forum though, oh well, you are a great crowd and I wish us all well.

I suppose you could say I had both severe and mild UC. I only had two severe flares, my first and my last, which resulted in colectomy. In between, I had 23 years of remission or mild flares. I never used prednisone except for those first and last flares. It worked for the first one, but was ineffective for the last. My surgery was in 1995, and I have no regrets. It is not perfect, but I stopped wishing for perfection when I got out of junior high school. I believe in reality and acceptable compromises. For me, the j-pouch fit that bill.

Since you are steroid dependent (the dose doesn't really matter) surgery should be seriously considered. If it were me, I'd try other steroid sparing medications, and if they did not work, opt for colectomy. You may think they are a waste of time, but if you have surgical complications, you'll be playing the "what if" game and undermining your confidence in your decision. Just my two cents.

Jan

I had UC for 20 years and the pattern was that it was treatable when I flared, with prednisone and azulifidine, which was what was used 1972-1992 as the biologics were just not available then, except Imuran, which was attempted I believe very early in the 1990s on me with no success.

Despite the symptoms being mild, we observed a spreading of the UC through my colon from 1972 to 1992. As I finished law school in 1991 I began to decline and deteriorate very rapidly. By the time my colon was removed in April 1992 it had practically dissolved according to my surgeon. This was frightening as my weight and appetite before surgery was good, and I did not feel as though I was at death's door. I was taking a very high dosage of prednisone at the time, I think 60 mg, but obviously it was not checking the progress of the disease.

The danger with UC is that it can be mild and then you can experience a rapid deterioration and then want surgery in a very deteriorated state. In my case my surgery had been postponed for some months 1st because of a delay in getting an appointment with my then very eminent surgeon, and then because he wanted or mandated that I lose weight. Once they had me on the OR table, 5 months had gone by and my deterioration in that time was massive although I had been proactive. This is the danger of fooling around with this disease. Things could stay in a "mild" mode for a while, maybe even 30 years or more, or they can get worse in a hurry. You just do not know. You roll the dice. But if you stay on top of it with annual scopes you should know the progress making it less of a dice roll.

I know you're having a battle with yourself about this surgery. It's not easy to schedule surgery when you're basically doing well. It would almost be better if you were forced into it by dysplasia or toxic mega-colon. But you really don't want to wait that long.

I think I mentioned this to you before, if you schedule surgery you can cancel it up to the very last minute. That sometimes gives one that little added sense of control that helps. It sounds like you're getting near to throwing in the towel. Believe me, I know how daunting this is. The first surgery decision was 'taken' from me - toxic mega-colon. That is NOT how you want to go through these surgeries. The recovery is much longer and it's often 3 surgeries rather than 1 or 2.

There really aren't any other alternatives out there. Once the j-pouch was perfected about 25 years ago, that's usually the surgery of choice. Some people would like to think there are other alternatives but the alternative to keeping a very diseased colon is often... well, not living. The j-pouch has over a 90% success rate. And you live in an area where you can have surgery by some of the top surgeons.

Good luck with your quest.

kathy

Jan, I'm curious why you say that the dose of steroid really does not matter? My daughter's GI is a believer in "low dose, long term" steroid therapy if necessary (when the asas are not effective enough) even in small children. According to her, it's acceptable to be on prednisone on a low dose long term and she is well aware of the risks. She bases this on 30 years of clinical experience and is a top international IBD expert and is on the crohn's and colitis working group etc etc. She even prefers this treatment option to immunosuppressants (in children and I suppose in adults)? I have gone back and forth on this with her for years, having read the horror stories and knowning the risks of prednisone. She does believe that dosage does matter and a low dose of pred is a much better option to surgery and biologics or immuno mods. I know (and even she knows) that this is not the mainstream line of thought but I just wanted to ask why you feel that way other than the obvious steroids are bad and to be avoided at all costs even surgery and biologics? That's debatable from our doc's perspective. And I say that while acknowledging that I'm very scared of pred, but also of surgery and the other meds.

Well, I guess I should have qualified my statement better. Yes, dose does matter, in the sense that risk of serious long term side effects goes up with higher dose prednisone, or other steroids. But, from what I have read, there is significant risk with long term steroids at any dose, and I am talking about the irreversible risks of avascular necrosis, cataract, heart damage, etc. It also does not reduce future cancer risk. To be honest, I have not seen any recommendations for long term steroid use for UC, but I admit that I do not focus my reading on the pediatric population. But, I do knw it can be associated with growth failure, and that is why more recent trends point more to surgery earlier rather than later. Usually, when I see it done, it is because the patient is refusing surgery or the newer drug options, not because the doctor is recommending it.

On the other hand, surgery offers no guarantee that drugs will not still be needed, and that was why I stated that, in my mind, it is best to exhaust those options before going with surgery. Surgery is not inevitable for all UC sufferers, only about a third or so actually ultimately need colectomy.

The dilema I guess is which set of risks are you willing to accept.

Jan

2.5 mgs of pred. oh how i wish that was my case. i know what id do...

Jan,
Yes I guess that's it. I know it's different than the top down approach most docs in the US are using but I think our GI feels that the risks of low dose pred are less than the big guns (and she is a paid consultant for the company which makes remicade). The growth failure is definitely an issue but not with low dose alternate day. She seems to worry that the UC will in fact be CD, which is more common in children so perhaps that's one of her concerns with surgery. Again, not at all the standard, but I did want to throw in what our GI says (and I don't necessarily agree with her but I have to accept that I'm not a doc finally) for the OP who might want to seek out a few opinions re: 2.5mg of pred vs surgery as everything has its risks.

Hi Badplumbing

My UC was mild most of the time because I was always quick to get onto medications when it would start to flare. I did get the odd month where life was a bit difficult but most of the time I was OK and hardly ever took a day off work (may have only ever taken one day if my recollection is right). The reason I had to go for surgery was my colitis became steroid dependant. When I would flare I would take 50 or 60mg of Pred to induce remission and then would flare again when I reduced my dosage (slowly) to about 20mg so was on 20 to 60mg of Pred constantly as well as 150mg of 6MP and a bunch of Asacol. Generally I tolerated steroids very well (possibly too well) but started to hate the effects of the cocktail I was taking after my 6MP dosage increased from 100mg/day.

I have had a pretty terrible year following my first surgery which didn't go well. Without listing everything, I will say that I've had 8 trips to the local ED and a total of 5 surgeries, 4 of which were open laparotomies. Also I've only recently had takedown.
Due to the issues I've had, I am probably negatively biased but my experiences are relevant in that there is always a small chance of things not going to plan. I would say that if the dose of Pred is as low as you say, see if you can get away without surgery for the time being. Oh and FYI, I think I will end up being just fine with this Jpouch thing even after all the probs getting to this point.

I wish you the very best of luck in whatever course of action you take.

Bad Plumbing,

I had bad flare ups, and amazing remission in between. The time between remissions just got shorter and shorter until 15 years later I opted for the j-pouch.
Just don't forget about us people who are completely, and totally, 100% happy with their J-pouch. It happens!
Best of luck with your choices.
CJ