embarrasing complications

Unfortunately for me, I never had any accidents for 2 years and I was flaring the whole time. Then, suddenly, it started happening all the time--several times a week. This was the symptom I couldn't live with and what really made me decide on the surgery. I hope it does not become frequent for you.

When you have your colon out and have either a jpouch, kpouch, or perm ileo you can take all the imodium you want! I don't use it but did in the early days of recovery when frequency was higher. However, some continue to use if for years post surgery.

As for the accidents, you need to tell your GI that this is a new symptom for you. There are other drugs you could supplement with. Personally when I got to the stage of accidents I never found a drug that eliminated them which was one of the reasons on my list for surgery. You are no where near needing surgery but do try to work with your GI for a solution

Sue

Okay, I'll give my doctor a call. I hope she can find something that works for me. I just can't believe it. I was feeling fine today, I've been a bit tired but that's fairly normal for me right now.... it came without warning and, even though I was only a minute from home, that wasn't time enough..... it was humiliating.... but at least it was in my car and there was no one with me....

Thank you Denise, I'll pack my extra gym bag with the items you mentioned so I can be prepared and keep it in the back of my car. While it's terrible to have an incident like this, it's nice to know I'm not the only one...

kops2da said...
Pam222 - do you really take 8 Imodium a day. Boy, I have never taken more than 3 and that was a couple times. I can take one and sometimes 1/2 stops the D. WOW!
ElaineNY

Yep, before surgery I only took one in the morning 3 days a week, but now I am taking 2 every 6 hours. My output is so incredibly high, my surgeon recommended it, though it doesn't really seem to help much.

The only rectal med I'm on right now is canasa, and I only take that when I'm bleeding. There hasn't been any blood recently. I'll ask her about the ones you guys have reccommended.

The enemas will reach a lot farther up into the colon than the suppostories. So did your doc tell you to only use the Canasa when you're bleeding? It seems a little odd, because they help with all of the UC symptoms, not just the bleeding.

Yes, my doctor told me to only take the canasa when I'm actively bleeding and to slowly wean myself off of it when the bleeding goes away.  I have been off the Canasa for about two or three weeks now.  I've been taking asacal ever since I was diagnosed and am currently on a dose of 3 pills 3 times per day.  Before Monday I had been taking 4 pills 3 times per day for a flare up that occured just after Christmas.

Just a reminder, if you haven't had the surgery, no matter how tempting it is, DO NOT take Immodium when you have a flare (or at all actually). Taking Immodium when you have UC or CD can lead to Toxic Megacolon and then you won't have to make any decision to have the surgery, because you'll end up in the ER and when you wake up, you won't have your colon anymore.

Asacol is pretty much first line medication -- you're lucky it's been working for so long with out a flare! There are several other meds you can try -- Colazol and Lialda are similar to Asacol, but my GI switched me to Colozal after he saw studies that said it was more effective, and when Lialda had been out for a little while he moved me to that because I wanted to cut down on how many times per day I taking meds and Lialda is once a day.

That said, the mesalamines never really did much for me, I was also on Prednisone for two years, only getting off of it when I went on Remicade. Remicade and Lialda kept me mostly in remission for quite awhile, but then I went from eight week infusions to six week infusions and then it was barely lasting a month. So I had the first step of j-pouch surgery Jan 12.

You have a ways to go before you need to think about surgery, but do explore different meds. If your GI isn't answering your needs find a new one. I switched GIs within a few months of my diagnosis and the second one was MUCH more competent and worked with me very well.

And I'll tell you what my 2nd GI told me -- I wasn't hearing it at first, but after a few years of flaring I came around -- the surgery is the cure, and if you ever want to stop dealing with UC that's what you need to do.

I was very resistant to surgery. To me it seemed crazy that you "cure" something by removing it, but even though I am struggling with the temporary ileostomy for another month, I already feel a lot better with my colon out.

Meesh

Also, and forgive me if this is a rude or silly question... I really feel like I don't know much about this... do you have to have a colostomy bag when you have the surgery? are there any harsh side effects? Do you go back to "normal"? I'm hoping i can find the right combination and amounts of medicine to take without having surgery but, like your doctor said, surgery is always something to think about. Apparently, from what my doctor says, I have a relatively minor case of UC, not very much of my colon seems to be affected.

Neferet, the surgery is typically done in two or three steps, two being the most common. With two step the first is pretty major, that's removing the colon, constructing the j-pouch and making the stoma for the temporary ileostomy (yes, you have a bag). Then about 12 weeks later (some surgeons do it sooner, but most seem to prefer waiting 12 weeks for the j-pouch to heal) you go back to have the ileostomy reversed, which is called take down.

You'll never be back to "normal" but j-pouch surgery has been pretty much perfected and has a better than 90% success rate. You'll have more BMs than pre-diagnosis but you won't have the sense of urgency and the lack of control. No more accidents.

The best sites for learning about the surgery are www.j-pouch.org and http://www.colorectalcare.org/ipaa.html. Now, when you go j-pouch.org and start reading the posts, bear in mind that, like here, the people who are not having any trouble with their j-pouches tend to be out living their lives and not posting. To there credit, there are a lot of happy post-surgical posters who are doing very well and want to spread the word that the surgery works. But you definitely can get the impression that the surgery can cause a lot of trouble -- but if you "read between the lines" so to speak you'll see that most people are quite happy and only regret not having done it sooner.

Believe me, the process is no picnic, but unlike the suffering of UC, going through the surgery, more often than not, has a happy ending.

So, if I were at the point you are (and I was), I'd still try some different medications (you don't want to second-guess something so irreversible as removing your colon), but educate yourself about the surgery so that you'll be ready if it should come to that.

Good luck!!

Meesh (Meesh62 at j-pouch.org)

P.S. Don't know about Pepto, but I popped Tums like there was no tomorrow when I had UC and no harm done.

My surgeon said the chance for success is much greater if the surgery is done in two steps, three if there have been further complications such a rupture or other damage.

I have a client who's husband had the surgery in one step and he had so many complications he now has a permanent ostomy, but he's apparently happier with that than he was with UC. I don't think I could ever adjust to a permanent ostomy.

Neferet, the best thing you can do is research the heck out of the surgery, consult with a surgeon (or two, or three). The j-pouch.org site has a link to colorectal surgeons. My GI recommended one to me and he was also on the j-pouch.org site AND he always makes the Best Doctors lists in area publications, so I was pretty happy with my choice. And when I was doing my preop tests and the techs would ask me who my surgeon was, when I said his name they always said he was one of the best. So did all the nurses on the surgical floor when I was recovering.