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I'm curious what others have experienced with J-pouch surgery in the sense of it being "curative". The surgery is said to be a "cure" for ulcerative colitis, and that post surgery, we all  go back to being perfectly healthy people. Does anyone else find this really simplistic? If colitis is caused from auto-immune responses, isn't that part of the disease still there, even if the colon is healed and/or removed? The autoimmune aspect (at least for me) seems to cause other symptoms (joint problems, random fevers, general malaise, headaches, etc.), not to mention the difficulty with keeping electrolytes in check, and generally having less energy that normal people. Is this just my experience? Has anyone else had lingering life-style symptoms post surgery besides pouchitis? Every time my bloodwork is done, I have high inflammation markers despite being "cured". I had my surgery 15 yeas ago and this has always been present. Life is of course a trillion times better than with colitis, but I wouldn't go as far as to say I have a perfectly healthy body.....

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Nope.  We all know it's not a cure.  Of course getting the part removed it affected the most helps some.  It didn't help me.  I think it.... not directly... affected my pouch.  I had it for awhile and I thought it was way worse than the UC I had dealt with.  I have an ileo now.  Much better.  But I went through alot to get where I am at.  But also as you say it is an autoimmune disease.  You never get rid of that.  I have skin problems now.  I cannot remember the name of it but it is also associated with the disease.  Joints too. But having the colon out is one less thing and makes it easier to deal with other problems.  

If it's not one thing to another.  The disease doesn't go away because we have our colons removed.  We all know that.  We are living proof. 

My body is healthier now than it has been in a long time.  I just hope it does not get any worse as I age in other areas.  I do think about that now.  With age comes wisdom.  And thinking ahead to things that may come up and trying to prevent them if you can. 

Richard. 

My GI is an IBD specialist. He counsels all patients now going for a pouch prior to surgery. He said they used to use the word "cure" years ago when it was a newer surgery. Now, he says to all that up to 50% of all pouch patients will have "some" issue in the lifetime of their pouch.  Could be higher.  He never says "cure."

 

Duck,

I think you answered your own question- surgery is curative of the ulcerative colitis which only effects the colon and is thus gone once the colon is out. It doesn't cure the autoimmune disorder that caused the UC in the first place. That autoimmune disorder may cause Crohn's to develop down the road AFTER the colon came out, which happened 15 years later in my case.

However I do believe the surgery cured my UC which was very bad and is nothing like the conditions I subsequently developed which were much more treatable. IMHO it's a fair usage in some cases as long as you understand that the particular disease is cured but doesn't mean you are necessarily out of the woods on a host of other bowel and other problems that are manifestations of autoimmune disorder.

Last edited by CTBarrister

The disease is underlying and constantly lurking in the dark corners of our bodies...I got rid of the horrible IBD, the twisty colon and bleeding...I did not get rid of the allergies, the horrific joint pain or the other medical problems...I won't get rid of them unless someone finds a cure for Autoimmune.

I do not remember them talking about a cure back then but more of a 'solution' to a problem...they were right...it was a great solution to that particular problem and I have never regretted it.

Did it give me a healthy body? No...did it give me freedom to decide how I wanted to live my life? Yes.

Sharon

My GI and surgeon were very careful to impress upon me that life would not be the same as it was with a healthy colon. They also said that, with my jpouch, I may "occasionally" develop pouchitis that would be taken care of by a ten day cycle of antibiotics. Things were more complicated than that for me, but I suppose that can be neither predicted nor ruled out ahead of time......

In line with this thread, I do have some aches and pains but I teach exercise and I'm getting older  . I also suffer from migraines, which began much earlier than my UC, which seemed to come out of nowhere. Could they both be related? Both autoimmune?

I have outlined my history in other forums on this website. I realise how fortunate I have been, particularly after reading so many posts. In Australia in 1990 my j pouch operation had only been done lass than a dozen times. Yhe advice given to me was to keep fit and keep my abdominal muscles strong to assist with emptying my pouch. So we have to expel gas and excretia and we suffer from anal irritation and burning. If any of you have not tried marijuana I would recommend you do so. See my post for my reasons why on the medical marijuana forum. My advice...stray fit and get stoned every day.

This is interesting, thanks for all you responses. I guess I just find the physicians I come in contact with don't have this knowledge. It's always like "you've had surgery, you're fixed, what's your problem?" and don't seem to have a lot of knowledge about the other things we still have to manage outside of our bowels (joint pain, fatigue, malaise, etc.). Even friends and family can share this view, although they can be forgiven since they aren't the experts who are suppose to know

Not so sure that I want to live my life stoned...What is the point? 

I fought this disease and had surgery after surgery to remain as healthy as possible not to hide from life behind a cloud of smoke.

If a medical grade med helps you through pain and suffering then I am all for it. I am using Tramadol post op for just that reason but I cut myself off as soon as the pain reaches the bearable stage.

I lost control of my body due to my disease I will not voluntarily ceed control of my mind to drugs.

I have missed out on too much stuff as it stands to want to let life slide by me while I get stoned. 

Its just my opinion

Sharon

Hi Sharon,

Getting stoned is not losing control of your mind. For me it is a gear change. I am in a more relaxed frame of mind and this helps me enormously and really assists with my health overall. When I was first diagnosed with UC in 1977 doctors were saying that my personality type was common with UC sufferers. I think if your brain is always fast marijuana is a great way to slow down and enjoy.

Honestly I do not know John,

I have almost no experience with marijuana...I never did drugs as a teen (too busy balancing out pred, antibiotics and gastro drugs).

The little experience I did have (I tried 3xs) was horrific. I lost control of my thought process. I could not function professionally, got dizzy and lost short-term memory.

I like being in control; side effect of having a body out of control I guess.

But, and this is a big buttttt... I am a teacher. A professor of college and university kids. I know the difference between when the kids are strait and when they are stoned...they are dissipated, unconcentrated, incapable of coherent thought. They lose depth, boundaries & inhibitions. They shrug off that which is important in life and eventually prefer a world where they remain stoned (avoidance IMO) in order to avoid responsibility.

These are all of the reasons that I dislike it. I do not know what it does to/for you as a UC sufferer. I do not know the benefits that it offers to cancer patients. (I had cancer, was given pot, couldn't even manage to roll the joint! and never took it).

I also feel the same about alcohol in excess. Any mind altering substance scares me (I am admittedly a coward when it comes to drugs). I am also intolerant with people who use it as an excuse for immoral or bad behavior. (ex: DUI)

Like I said, I understand and have compassion for anyone who needs meds to survive severe  pain, post-op or chronic diseases...I just can't seem to understand people who use them like vitamins as a daily baseline to make it though life.

But that is me.

Sharon

ps. I am a borderline bulimic. I use sugar, carbs and chocolate like some people use drugs. So I have no business being a moralist.

Meh. For me, it is whatever floats your boat! If you can be responsible and productive when you need to, I see no difference between relaxing with a joint or a martini. Both can alter your perceptions, create apathy, and be dangerous while driving or trying to perform important tasks. But, if you know when being impaired in this way is OK, I see no problem. The rub is that there are those who do not know how to set limits.

There is no one correct answer on how to live your life. Being able to relax and dispense with caring about minutia can be quite liberating!

Jan

Yes. It is a powerful plant. As, I said you change gears. Some people do well with the slower pace. Its the same story.....a little is good....too much is not good. I would much prefer my children to be using cannabis than alcohol. I have several family members who are really nice people who become really nasty when they drink to excess. I think that the liquor industry and the pharmaceutical industry are major lobbyists against the legalisation of cannabis.

Point taken with the kids at school...if they are over using their minds are probably elsewhere.....not good for retention. Once again, if you have a student or young adult who is happy and doing really who really lets his or hair down every Saturday night what drug would you like them to be abusing. I think cannabis is the only drug that you can't die from overusing. You pass out well before any danger. Gotta go.  talk more later

 

Let's not forget that there are now a variety of different types of cannabis. For medical uses, many people (including myself) utilize high CBD content varieties which are thought best for inflammatory disorders. These lack the psychoactive side effect - at least I have never felt stoned (and prefer it that way). Part of the revolution in the medical use of cannabis has been the emergence of products containing a spectrum of THC:CBD ratios. Using cannabis need not mean getting high any more.

Yeah, there's MJ that's all "head" and gets you stoned... And there's other strains more "body" that do not impact you that way as much but help with things like inflammation, etc. There's also CBD oils.  The world needs to get onboard with this: if from the lowly poppy we through history got opiates, we need to do the same with MJ. It isn't about getting high, many do not get you high, education is key. 

 

Last edited by rachelraven

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