is there a downside to having my colon removed?

I'm going through a minor flare right now -- 3 weeks of waking up at 5am and straining doesn't seem like a fluke. I mean maybe it's a result of IBS combined with UC, but this is starting to wear on me.

Anyway, I'm reasonably confident (and even more hopeful) that things will get better soon -- but I can't keep having these problems pop up. It affects my ability to go about my life and move forward to being the person I want to be when I need to get stuck in a month+ long period of relative inactivity.

So I'm thinking that I will eventually get my colon removed. I have read conflicting reports that range from everything going back to normal to lifelong complications and changes that have to be made when living without a colon. I have mild UC, so it's possible that my lower GI tract is in better shape than some others who go through with this procedure -- does that mean the complications might not come into play for me? My doctor has never recommended getting it removed, but I know that's more of a personal decision than one a doctor would make in any circumstance other than an emergency.

Does anyone have experience with getting their colon removed? What are/were the results? What could I expect if I were to go through with this?

what was the process for you like? how long did it last? what changes have you had to make?

I'd really love any/all information I can gather. I trust whatever my GI doc will tell me but it's always good to hear accounts from people who have been there, done that.

also: isn't there less severe surgery than j-pouch?

What is 'mild UC' exactly? Do you just have proctitis? Sigmoidtitis? Left sided UC? Isn't surgery a little extreme for a "mild" case? I do realise it is a personal choice but I would imagine you'd want to keep yourself whole unless entirely necessary.

Or perhaps you are just asking in advance to be more knowledgeable about all your options in the future.

suebear said...

There are 3 surgical choices; permanent ostomy, k-pouch and jpouch. Probably the simplest surgery is the permanent ostomy. Jpouch and kpouch are more complicated. There is no perfect surgery; best to write out pros and cons and compare to your life style and see which one suits you best. Each one of the surgeries has advantages/disadvantages, no surgery is perfect.

I don't think living with a permanent ostomy bag protruding from my gut is what I'd be aiming for with the surgery.

I want to have a normal, symptom-free life where I can start a job without worrying about needing to take time off/feel uncomfortable often, I can try exotic foods without having an anxiety attack at the possibilities of how my body will react, I can have a sex life where I don't need to think hours in advance about how my morning BMs will probably keep me in the bathroom for 30+ minutes, etc.

Do you think the surgery is a good approach for this?

Everyone has to decide things on their own. Even though surgery has been well received by just about everyone who has had it there are drawbacks. I don't say that from personal experience but from reading about what others have gone through. Surgery guarantees that you will be having about 6bm's per day, which is actually more than you have now. The urgency is gone but you pretty much say that you don't have any anyway. Complications on the J-pouch seem to average between 25% to 33% of the time. Of course any surgery can have complications, including death. It obviously doesn't happen much but it can happen. You might want to post on the ostomy forums and maybe you will get better insight. Personally, I think you are jumping the gun a little bit. There was another post on here recently about a new drug which has gone through Phase 3 testing and looks very promising. It worked in 45% of the cases and the doctors are calling in a first line therapy because it has had few side effects. If you can hold out a couple of more years it may be widely available and you can keep your colon to boot.

garylouisville said...
Surgery guarantees that you will be having about 6bm's per day, which is actually more than you have now. The urgency is gone but you pretty much say that you don't have any anyway. Complications on the J-pouch seem to average between 25% to 33% of the time. Of course any surgery can have complications, including death. It obviously doesn't happen much but it can happen. You might want to post on the ostomy forums and maybe you will get better insight. Personally, I think you are jumping the gun a little bit. There was another post on here recently about a new drug which has gone through Phase 3 testing and looks very promising. It worked in 45% of the cases and the doctors are calling in a first line therapy because it has had few side effects. If you can hold out a couple of more years it may be widely available and you can keep your colon to boot.

I do have urgency, but it's usually only when I first wake up and maybe one, occasionally two times in the morning thereafter. I usually don't have to go for the rest of the day after that -- unless I'm flaring like I believe I am now.

I agree that I'm jumping the gun, but can't know that unless I ask! Going to try to talk with my GI doctor (over the phone, as he's across the country) and see what he says about it. Sounds like waiting this new drug out might be my best approach for now. Thanks.

I don't think regular Asacol can be prescribed beyond 160 pills, meaning the mg dosage would go down.

Also, I've had mostly positive results from taking Asacol HD for the past 2+ years, though it has not been as effective as regular Asacol was prior to that when I was first diagnosed. I was taking 2400 mg (compared to 4800 mg) then and my symptoms went away completely from like 2007-2010.

I can't see my local GI doctor until the first week of December and my regular doc back east is out for the week due to the horrible storm...is there any other way for me to get new meds?

I've actually been staunchly opposed to taking enemas or suppositories. I've never been able to mentally wrap my mind around using such things. I'm now more open to them, but am still not sure I'll be able to go through with it. Every time I've tried an enema in the past has been an utter failure, where the saline (or whatever's inside) sprays everywhere but inside of me. I clench up and get too nervous to go through with it.

What is a higher quality probiotic supplement than Culturelle? Keep in mind that I'm lactose intolerant.

quincy said...

Why have you never been on them?

q

GI doctor never thought they were necessary (BELIEVE ME, I asked) and as mentioned earlier, I have trouble using enemas effectively.

re: mesalamine enemas "not being necessary" -- that's just what my doctor said when I asked if he thought I needed them after my last significant flare. He told me that the inflammation was not severe enough to need it unless I wanted to try them out. I'm thinking that I might want to go through with it now, though, after hearing what you said about being symptom free for years.

Also: I am not entirely sure what caused this recent flare (or whatever it is). I traveled from LA->NY for a wedding last month and started feeling sick about a week into the trip. Prior to that I could not tell you the last time I had any kind of noticeable UC symptoms. The only things that are coming to mind as far as what could have brought it on are:

- Excessive drinking at the wedding. I know this is never a good idea but there was an open bar and we were celebrating. I've done it before without a resulting flare. Kinda guessing this wasn't the cause, as my symptoms didn't show up until about a week later.

- Accidentally drinking old Brita water in my friend's fridge. He was asleep and I was dehydrated. opened it up, took a few sips, noticed an unusual taste and spilled it out/refilled. The next morning he told me it had been there, untouched for AT LEAST 4 months.

- Not readjusting to the time zones and eating less/not as well as a result. I went from waking up at 7am in LA every morning to sleeping until around noon in NY. I realize this is actually only 2 hours later given the timezone difference, but it led to me skipping breakfast and not eating lunch until around 3 or 4. I would then either skip dinner or eat something way too late. This "routine" lasted for about a week.

My GI doc thought my symptoms were caused by travel/lifestyle related constipation when I called him last week and suggested taking fiber supplements + colace. I guess it's still possible he's correct.

Some GIs are reluctant to Rx rectal meds. Maybe b/c they themselves would have issues with using them. But the fact of the matter is that research shows they're beneficial. No, they're not fun. But they're also not horrible. And there's no medicine that's fun to take.

It is, however, much better to use enemas than it is to flare. Or to go on stronger drugs. Or to have surgery. At least in my opinion.

DMC, what do you mean by "colon restructuring?"

And yes, everything I've heard indicates that UC can return in previously unaffected portions of the colon, so it's not wise to only have the portion that is affected removed.

sfc425, I don't think you can look at that trip across the country and find a culprit for your flare. It certainly wasn't the old water. Perhaps the plane travel (dehydration plus exposure to countless viruses) was enough stress to tip the balance. Sometimes crap just happens.