some autoimmune info

Thanks for the info Liz. That is very interesting and may explain many issues that people on this site are having.

Geez Liz, I feel badly for you! It all makes sense to me as I battle with my own issues. Thanks for your input...very helpful.
Sally

Very interesting stuff, Liz! I agree that it is important to step back and view all these autoimmune diseases as being related, and not distinct, separate diseases, even though we have to see different doctors for them. It also makes sense to me that major surgery could be a triggering event. Not so much because a portion of the GI tract is removed when you have IBD (although I have no doubt it is a factor), but because it is a major source of stress on the body, and can cause your system to be flooded with all those chemicals that regulate your immune system.

This link to an article from the American Autoimmune and Related Diseases Association titled, "The Common Thread," discusses how unraveling the causes of autoimmune diseases will help us treat them. They all have the same underlying "threads" of a genetic susceptibility along with environmental triggers that set the whole thing in motion. Part of the clues that indicate they are all related is the fact that autoimmune diseases tend to cluster in families, but not necessarily the same diseases. This implies that even with the same susceptibility and environmental exposure, each individual may express disease in their own unique way. This also accounts for the notion that while colectomy may cure UC, but you still have the underlying innate autoimmune dysfunction.
http://www.aarda.org/common_thread.php

So the point is to try to figure out how it all begins and treat it from that end, rather than from the endpoint of a particular organ or system.

Maybe in our lifetimes they will get a handle on this...

Jan

liz11 how does CC know this for sure? Is there new research? How do they know its not that the original diagnosis was incorrect but that it was a result of the surgery that one develops chrons? All the GI specialists/surgeons I have seen have all told me that those who develop chrons after surgery were likely misdiagnosed....

I think that what she is saying is that there is new evidence showing that surgery itself can be a trigger for disease progression or evolving, not specifically a cause and effect. That perhaps it would not have happened without the surgery. Of course, who is to say that some other trigger would not push you off that cliff with the same result? And, of course, you would need to have the genetic susceptibility for it in the first place, otherwise everyone having surgery would be at risk...

For a long time, there has been evidence of Crohn's disease recurring as a new flare with new inflammation in a previously unaffected area after intestinal surgery.

Jan

Hi everyone, I just had to chime in about this topic from another perspective. I realize that we have all been through the ringer with our diseases and that stress is a major contributing factor to our overall well-being. In my own research, it is very clear to me that many of us have unreasonable fears and higher than average worry wart personalities which can lead to disease (hence the term dis-ease). The point I am trying to make is that the percentage is very low and it is not likely that we will get anything but a new opportunity to experience life disease free if we change our thinking. I am a firm believer in thoughts creating reality. Why worry and continue to seek answers for all of our little aches and pains. I have plenty! We are very fortunate to be among an exclusive group of people who are blessed enough to have had this opportunity. The healing is in the giving back. I have had the opportunity in my professional life to console many people with autoimmune diseases such as ours. It is a gift to be able to give to those who are scared and hopeless. I try not to dwell on what might happen because I can surely drive myself crazy. We are all here and that in itself is wonderful. Life is good even on the bad days now for me. Healing starts from the inside. It took me many years to figure that out. Think healthy, think happy and give where you can. You cannot go wrong with this recipe. I am so grateful for this forum and all of the people who make it special.

Blessings and happy holidays,
Rich

Yes jan that is exactly what I was saying. Considering CC is probably the top research facility in the world for jpouches I am sure they have studied this thoroughly if Dr. Shen is speaking specific numbers.

In my case, I am having many problems post jpouch removal/permanant ileostomy. None of these problems are simply... little aches and pains. Dr. Shen ruled out crohns yet again, but he did some genetic testing which shows high susceptibility to some other autoimmune diseases. So with that and my clinical symptons, he and a rheumatologist are putting a label on it, so that they can treat me. If it was just aches and pains or as easy as changing my mind 10.5 ago when I had UC hit me I surely would have no reason to be on this forum.

I chose to share this information, because it seems there are many on this board who are suffering from post jpouch crohns diagnosis, or joint problems, and other significant issues which are truly preventing them from working or living their life fully. This information is valuable in order to seek treatment.

Also, in my case, as jan described, I believe it was either the trauma of a massive massive surgery or the trauma of post operative complications and infections which triggered these new autoimmune problems.

Liz,

I think you must have misunderstood me and I am in no way undermining your aches and pains. I had a very traumatic 1st surgery and many complications post-op along with an ileostomy that leaked, got infected and just flat out sucked. I also have serious joint pain, suspected rheumatic disorders and many other things that I could focus on if I wish to. I could blame the whole world if I wanted to but the simple truth is that it is what it is and I am grateful for all of it. I have grown as a human being. I offered my suggestions to help, not make you feel like you needed to defend your situation. I will keep you in my thoughts and wish for you the best in your quest to find answers. Your input is greatly appreciated in this forum as are all others. I am one of you, remember!

All valid points to keep in mind, I am sure. Positive attitude goes a long way in regard to minimizing how we perceive symptoms, even if it cannot truly be a "mind over matter" situation. Anxiety and anger just fosters more pain and dysfunction. But, making the best of things does not also mean giving up hope for something better.

I think the whole point of the thread was not to give people something else to worry and obsess about. Heaven forbid, since many of us have a full plate as it is! I think the point was to indicate how research into ALL autoimmune disease is useful for anyone who has ANY autoimmune disease, since they are all intertwined. If you take a look at the link I posted, it explains how understanding how it all works will eventually help our doctors treat us in a proactive manner, instead of waiting for things to go haywire and trying to clean up the mess after the fact. Exciting times indeed, especially if you compare to what little was known just a generation ago!

Obviously, we cannot forgo colectomy surgery out of worry for future problems, since for most of us, it was a last resort sort of choice for one reason or another. Besides, that is just one of many triggers... You cannot live in a bubble.

Jan

It makes sense to me that at some point, many complications and additional problems become more than coincidence. While Tom has not developed Crohns or arthritis, his UC flared out of control IMMEDIATELY following a gum graft surgery that was very stressful (for an 8-y-o); his allergies and hyperplastic sinisitis appeared only after his 5 UC-related surgeries; and he has had SO many "routine" post-surgical complications it's...routine. I write this from the recovery room after his 5th foot surgery for a bone and graft that have not healed after 3 attempted fusions. The current one IS healing (due to the addition of experimental concentrated stem cells), but he is here because of sudden infection that developed rapidly and unexpectdly last night, 7 weeks after the most recent surgery. The site has been flushed, and he will now get a PICC line (his 6th) and be on IV antibiotics for 6 weeks. Still hoping to keep the hardware in long enough for the graft to finish incorporating. If it does, the metal plate will still have to be removed because of infection risk. His current orthopedic surgeon, and before that, his pulmonologist, have always said his auto-immune situation is a factor in various problems--which at this point are seriously getting old. The ability to remain positive is not always an option. Too many episodes of severe pain can permanently change brain chemistry, particularly in a young brain. Fortunately there are pills for that.

Gee, Connie, I really have no words for the empathy I feel for you guys. Tom (and you) definitely deserve a break. While I am quite pleased to hear that that darn toe is healing, it just seems so bleepin' unfair that he is back to the business of these never-ending complications. Thank goodness he has his parents to help him through this. Can't imagine what it would be like if he was out on his own. He was robbed of his childhood, and so were you!

You must be numb about now...

Jan

The stress of pregnancy can bring it on too, UC for me. I think inflammation comes back in a different way...no matter what. I have arthritis and degenerative retinas. When you go through such an extreme illness, it just keeps giving. My eye specialist, said it was the nutritional factor while having UC, that subjects you to further issues. Whatever the reason, I don't think you are ever over the UC once you have surgery to remove the colon and rectum, inflammation just goes somewhere else in the body.

Connie, prayers to Thomas. He has been through so much, I remember years ago with his sinus trouble. Which I feel is UC involvement too, just inflammation going some place else after surgery. I'm wondering if we have an inflammation gene.....that has gone haywire.

Oh Connie - I just feel so sad for you all. Tom needs a break from all this. Poor 'little' guy. I so wish I could do something.

Thinking of you all and sending hugs, kisses, and healing thoughts and vibes your way.

kathy

I found this on pubmed:

http://www.ncbi.nlm.nih.gov/pubmed/23211587

Connie so sorry to hear about what Thomas is going through. And yes, my point is that this is far more than just aches and pains for many of us and I was sharing information so others may be knowledgeable in seeking care should they encounter problems.

My so-called "aches and pains" which seem to be from a new autoimmune disease include a chronic unhealing sinus tract and perianal wound from the jpouch excision (which I had another EUA for 2days ago and will be having my 7th EUA surgery for it in 5weeks), permanant and severe PAIN in that area causing inability to work, severe shortness of breath, lung scarring, gut issues, joint issues which oftentimes prevent me from moving at all, disgusting skin lesions, and weird skin infections. It was my surgeon at CC who began the hunt a few months ago to figure out what was going on "autoimmune wise" because of the unhealing wound and lack of recovery from my surgery in March. Clearly he believed that the many complications and additional problems were more than coincidence and attitude.

Initially crohns was suspected which is very serious if it were left untreated after a permanant ileostomy as it could result in short gut syndrome. But now several months later, much testing, and many specialists, my doctors now think I have rheumatoid arthritis, lupus or some other new disease... all very serious autoimmune diseases which attack organs that can't be just tossed out like colons. People die from complications of some of these autoimmune diseases, unlike ulcerative colitis. So this is not just something to take lightly. Having knowledge about what is going on can help doctors provide treatment for a disease in order to possibly prevent further damage to specific organs and more importantly allow one to get back some quality of life. And I do think, like in Thomas' case... doctors knowing what is going on autoimmune wise can make better decisions about surgeries, medications, and care.

Connie, Thomas, and Liz,

My heart aches for you. It is So horribly unfair that you are going though all of this. We are thinking about you and sending our best wishes for improved health as soon as possible. You are each a warrior in your own way and it's admirable that you help so many people with your willingness to share your experiences.

Thank you, bless you, and wishing you all the best.

I think these findings are very important for people such as myself who are considering surgery. No one in family has a history of autoimmune disease so it was out of the blue for me. I don't want to go into surgery if the surgery itself can be so shocking on the system that it can result in another autoimmune disease. I'd like to understand why CC believes that it is the surgery itself and the shock that is causing this? Or is it that these diseases would have eventually come anyway with or without surgery?

Also, if it is indeed the shock of the surgery that cuases it, why do so many patients report that they develop Chron's 8+ years after surgery? Wouldn't the shock of surgery be gone by then? Also, if it only effects 7%, then why do 93% people not develop Chrons after surgery? They too had autoimmune symptoms prior to surgery - why didn't the surgery shock rebook the autoimmune problem again somewhere else?

I always thought that those who develop chrons or another autoimmune disease after surgery would have developed it regardless at some point with or without surgery and that they always had that autoimmune disease susceptibile gene or whatever that just hadn't yet surfaced. I didn't think it was attributed to the surgery.

Thoughts?

Well, you have to remember that there are many triggers for autoimmune diseases and we just don't know how to predict which trigger will set in motion any one or more disease pathways, at least not currently. Also, remember that autoimmune diseases are notable for unpredictable disease courses with relapse and remission. It can take a very long time for the disease to manifest after exposure to a triggering event, drug, infection, or whatever.

It is not like catching chicken pox and knowing what happens next. Even if we may have the same genetic weakness, we each manifest our autoimmune disease in our unique way. Part of the research they are doing involves figuring out who will most likely respond to a particular treatment. They hope that will help recommend effective treatment without the random guessing, and recommend colectomy sooner on those who would not respond to treatment.

But, I don't think this stuff will help anyone trying to decide on colectomy right now. If your colon is toast or you have dysplasia or cancer, colectomy is in your future, even if surgery may trigger something else. By the time you have your surgery, theories can change again. Who knows? Maybe the fact that someone had disease severe enough to need colectomy is the real factor, not the surgery itself. My point is that it is very complex and only the tip of the iceberg has been examined.

Jan

Jan and Liz great insights about autoimmune diseases and how they work and affect other areas of our health. I've had UC-crohns for 25 years and then was diagnosed with lymphoma 1 year ago. I was told it probably was brought on by the 2 GI diseases. My GI tract is much more of a problem now, in the last year, and am in the bathroom more often and for longer periods of time, sometimes 20+ times a day. However like mountain man I believe I am lucky, am very positive and eating extremely healthy foods mostly for the cancer, and have always exercised every day, 6 days a week of tennis. I block out all the health issues and and frankly only talk about it on this site. You all are wonderful, so glad I found you last year! My GI guy said he is shocked I am able to be so active, he's never seen anyone before like this, I'm actually a nationally ranked tennis player, and believe the exercise has helped my GI and cancer tremendously. No one except my sister knows how bad the GI problems are and I just keep forging on with my meditations and positive beliefs.

quote:

But, I don't think this stuff will help anyone trying to decide on colectomy right now. If your colon is toast or you have dysplasia or cancer, colectomy is in your future, even if surgery may trigger something else.

Ditto that. If the colon is in terrible shape, it has to go, regardless, and worrying about what surgery may or may not trigger sometime down the road is borrowing trouble. Be aware of possible complications, but live one day at a time.