An informative rant
Category: 6 months After TD
You know what pisses me off? Well theres a myriad of things but if I were to pick one to focus this post around it would be…this phrase, “Isn’t a jpouch a cure for colitis?”.
There is such a lack of education in that sentence and frankly it’s not the patients fault. I have heard GI’s and surgeons refer to surgery as a cure and I’ve read a boat load of articles that say the same thing and all I want to do is strangle them for flooding the world and the internet with completely false information.
“Well if your disease is only in your colon, and you remove it, doesn’t that solve the problem?”
Daaaahhhh! I am going to speak for most people that I know with IBD (and I swear I’m super close to knowing everyone in the whole world with IBD), and say that our diseases while confined to our colon, absolutely affect other parts of our bodies. Whether its lingering arthritis, skin rashes, hair loss or whatever….its still a result of having UC. Sure, the UC is gone…doesn’t mean it isn’t lingering.
Also…we all still have some of our rectum. Whether that is 3cm or less…that part of your body can still hold UC. It can still flare and cause discomfort. Sure, your whole body isn’t down for the count, but it doesn’t mean it is gone.
And my favorite part of this argument is pouchitis. I am currently getting over a bout of pouchitis and all I can think is that I wouldn’t have pouchitis if I was cured.
Cure. What a dumb word. People…wake up. Nothing has been cured since polio…why? There is no money in a cure. All of you out there hoping for one, hold your breathe until it comes because its not happening. We might get really good treatments in the future…but not cures.
Before I had my colon removed, my rheumatologist said to me, “I wonder if in 10 years we’ll think about colectomies like how we think about lobotomies now”. Which was hilarious and terrifying all at the same time. If I learned anything from that, it was that not all doctors are dumb enough to call this a “cure”. Or to think that removing large organs solves problems.
So here is where you pay attention. A jpouch is not a cure. Getting a jpouch means trading one really huge problem for a bunch of other smaller problems. Keep listening.
I would gladly have my colon removed any day of the week (and twice on sundays). I am SO happy now, and so much healthier but it doesn’t mean that I am cured. I have residual things I deal with, that are nothing like having UC, but they are still there because of it.
Remember, Doctors are dumb.
For those of you out there thinking about surgery don’t let any doctor convince you this is a cure. If they do, either run out and find someone new, or put them in their place and tell them how wrong they are. Considering I haven’t met a single surgeon who has a jpouch, or experienced pouchitis, they can’t tell you its a cure from personal experience.
I know this is a little scattered but I am so tired of seeing people confused when they hear this isn’t a cure. Or worse, disappointed that they still have problems after their jpouch.
Its not a cure. Think of a jpouch as an extreme form of long lasting treatment.
May 21st, 2012 at 3:05 pm
we must be having the same kind of day Jackie – eff me. I get tired of “but you were in the hospital for so long, I thought you were better now”. Yeah, I’m better than I was but that is like comparing a pinto and a chevette. They both suck but which one sucks more than the other?
May 21st, 2012 at 5:34 pm
Jackie,
I say this with the utmost respect for what you (and your friends) are doing. They fact that you put yourself out there and talk about a lot of taboo issues with humour and intelligence is wonderful and inspiring. Now, I hope you don’t take offense at what follows, as it’s just my 2 cents and that is I can understand this disease is one that consumes a person and their loved ones and it’s incredibly traumatic BUT if you spend a large portion of your time advocating/educating/learning you are always thinking of the disease. I personally believe that part of healing is not being mentally consumed by a condition. Clearly you are taking control OVER the disease as much as you can but still, I have to wonder if you can move post UC (and I don’t just mean you I mean me and others too) if you are always on the net thinking about it.
You said you have many small issues and are not cured. But MANY people have many small issues. They think of themselves as healthy and well and the small issues are small issues. I have at times debilitating and generally chronic back and neck pain. I don’t have a “disease” but it is still an “issue” yet I am “healthy”. Perhaps someone with the same amount of pain but with UC/jpouch would classify it as being part of their disease and continue to think of themselves as unwell? I think the way we think of something, the way we frame it, the space with give it in our lives and how we approach it all makes an impact on how we think of our health and bodies.
I don’t know if this makes sense. If I were in your shoes (I’m not but I have several very close family members who have been near death and clawed their way back) I would do my best to think of myself as healthy and well and not diseased and uncured.
Don’t mean any offense again, I really hope you don’t take it that way.
May 21st, 2012 at 5:42 pm
Hey Sherry,
I am not offended at all. I hope that people would try to call my on my shit if I am out of line. I don’t think I am out of line in this case so let me try to clarify a little. I 100% agree with you about a mental state and feeling healthy. Like I said, I would do it all over again 100 times over.
The problem that I have with this, is it is, in fact, not a cure. Plain and simple.
Surgery does not cure the body of this disease. It takes away a huge portion of it and makes like livable. It is a treatment. Treatment and cure are different. For instance, chemo and radiation do not cure cancer patients. It treats their cancer. That is different because their cancer can come back but it also may not. Does that mean their body is 100% free of cancer cells? Most likely not. (I’m not a cancer expert.)
The term “cure” here bothers me mostly because its misleading. I was told this is a cure. I know many other people who were told its a cure, and people are still being told it is a cure. I just think that is wildly misinforming people and giving boat loads of false hope.
I think that surgery should be called what it is. Trading large problems for much smaller, more manageable problems. Surgery gave me my life back, but it wasn’t a cure.
I will give surgery all the credit in the world as a life changer. I just can’t justify calling it a cure. I think that if people going into these surgeries understand that they will come out, happier and healthier their mental state can be restored. I just don’t think they should be mislead into thinking that they won’t have any other problems ever again because they are “cured”.
May 21st, 2012 at 6:22 pm
Hi Jackie
Thanks for your response. I don’t feel you were out of line at all nor was I trying to call you out. Just sharing my perspective. As for your Rheumy’s comment, I’ve been thinking about that. I guess she’s implying it’s a very drastic and even barbaric measure (that’s what labotomy now implies). However, I’m pretty sure that over 90% of labotomy patients wouldn’t say their surgery was a success which made their life better or even “cured” them (I have heard this from people with Jpouches so…?) . I completely get your point though. Hopefully in the near future it will be a relic of a treatment. Thanks for your post and I hope you stay pouchitis free for a long time.
May 22nd, 2012 at 2:24 am
When I had my surgeries it was explained to me (and my family) that the j-pouch was essentially a cure. As a result, all of the issues I had post-takedown were a lot more difficult to deal with. When I complained of symptoms to my parents they doubted me, and I doubted myself. We were misinformed. I lived with a pouch for years before I understood that life with a j-pouch is still life with a chronic illness. It would be another 10+ years before I would hear someone else say that. I can see why people would assume that a colitis patient is cured once his or her colon has been removed. It makes sense. But an MD should know better. The fact that the doctors are the source of this misinformation is the part that pisses me off. Its kinda hard to convince people when you’re going against the word of a doctor.
May 23rd, 2012 at 9:39 am
Curious, because I haven’t gone through the surgeries as my UC isn’t as bad….but would you consider total remove of your colon and a permanent ileostomy a cure then?
P.S. Thanks for the keeping it real info you have provided as you went down this journey.
May 23rd, 2012 at 2:44 pm
This is kinda where the problem lies. Removing the colon and rectum takes out the active UC. In theory you could say that is a cure because no trace of UC inflammation is in the body.
But what does cure mean to you? Or anyone? Does a cure mean 100% good for life? Happy healthy issue free? Or does cure just mean that particular problem is gone?
I guess if we can decide on this we could solve this issue!
I have yet to meet any ostomates who are 100% ok all the time. In fact the 3 that I know best have issues monthly or so. Again like a jpouch, they are all happy to be where they are..but their lives are not problem free. Their health issues are not solved. Does that mean that they are cured? Would you consider UC still to be the umbrella that caused all those problems? Or even though the ostomy is due to UC, are the ostomy issues completely separate from UC?
I would LOVE to have this conversation with everyone around a table sipping on water/whisky/vodka/coffee/soda. Whatever. Its pretty fascinating. And quite frankly..no one can really answer it. Its interesting that what seems like a simple yes/no question is more of an opinion actually.
May 24th, 2012 at 12:47 pm
I think a lot of confusion over these diseases lies in what I like to call “Gastrointestinal Real Estate.” In most cases, IBD confined to the colon=UC. IBD that goes throughout the entire digestive tract=Crohn’s. So, take out the colon=UC gone! People fail to recall that autoimmune diseases are not cured simply because the offending organ is gone. The mechanism of the body attacking itself has not been cured.
Often, it finds other areas to attack. I know very few IBD patients whose sxs were totally limited to their colon. Most all of us have arthritis, eye, skin, mouth lesions, as Jackie mentioned. And, let’s not forget misdiagnosis. Ie. Crohn’s that was once confined to the colon activates elsewhere once the colon is removed, was once diagnosed as UC. So, yes, extraintestinal sxs may still be present, one may still have sxs in the remainder of the rectum. There are a whole slew of possibilities patients need to be aware of, and the surgeon providing the surgery should also be providing full information so the patient can make the best decision for their heath. These are sneaky bastard diseases and are confusing even to the experts. So, I agree with Jackie, that simply touting this as a cure as a means of simplifying it, is incorrect, and potentially dangerous because it changes patient expectations. We should all be/have been informed of the risks of the surgeries including misdiagnosis, continued extraintestinal sxs, and pouch complications such as pouchitis/mechanical issues. Now, this is not to say the surgery is not a vast improvement on some/most of our lives. Despite all my complications, it’s been a great improvement. My frustration, and Jackie’s, I think, lie in the lack of information provided by surgeons and the need for advocacy to help patients better help themselves, which is what Jackie, and others, are trying to do.
December 12th, 2012 at 7:08 am
OK, so I’m a little behind in reading this post. The number of people I’ve met (either face to face or via internet) in the past 2 years that have had surgery for IBD is amazing to me. I had my colon removed 12 1/2 years ago. The plan was to build a pouch but after the pathology report came back inconclusive (didn’t know it I had UC or if it was in fact Crohn’s). This made the doctor rethink his pouch building plan. At that point it was either an ostomy or what I like to call a “poop shoot” where my small intestine would be directly connected to what was left of my rectum. I opted for the shoot. My doctor did not tell me that I was magically cured. He did not tell me that this surgery would solve all of my problems or symptoms. Jackie, I get as frustrated as you when people are misinformed and especially when their doctor is the one providing the misinformation. Thank you for your commitment to educating the public, raising awareness and patient support!!
December 31st, 2012 at 5:37 pm
Robin thank you for this comment! Everyday I am amazed at what doctors are able to do with our bodies but equally amazed at how they forget to inform us of vital information. It seems like with new innovations, there should be new information passed along. Unfortunately, that doesn’t seem to happen. Luckily we have the internet and forums and blogs and we get to help educate each other! And you’ve been a big help in this too by helping us to get the word out in a public format!
March 12th, 2013 at 10:37 am
Jackie, I was told I won’t die of colon cancer now. I had low-grade UC for 30 years. I had read that every ten years doubled my likelihood of the Big C. My father had colon cancer and was treated. Education is the key to helping those of us are afflicted. Docs aren’t the best sources. They’re mechanics. It is the social workers, support groups and people like Jackie on the web that help inform and teach. I’ll gladly take the J-pouch solution, not a cure, instead of a bag. It was interesting watching my surgeon react when ostomy bag blew off during an office visit. That was a bad day. Keep smiling and teaching any way you can – snarky or not.