Advice sought on upcoming ostomy reversal - Need guidance on reversing ostomy after emergency surgery.

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number9
Jan 05, 2014 10:46 pm
Greetings all. I stumbled across this website last night and would really appreciate any advice from the community here on a potential upcoming ostomy reversal. This is my first post here and I apologize in advance for the length.

I'm ~6 weeks out of the hospital from emergency surgery that involved: removal of a (non-cancerous as it turns out) blocking mass in my colon (that was bad enough the doc couldn't get the colonoscopy instrument past it to examine the rest of my colon), removal of my appendix, and repair of a fistula that I had developed between my colon and bladder; all the result of allowing things to fester too long.

The appendix was a surprise to the surgeon (and me) once he opened me up. Although things from my hospital stay are somewhat fuzzy, I think he said it was gone (could have been hyperbole) when they went in and that my immune system evidently worked as it should and walled that area off from the rest of my body. The docs weren't certain how the progression went and whether these problems started with the appendix or my colon, and progressed from one of these places to other organs. Pathology (after finding no evidence of cancer) did at the very end of my 11-day hospital stay find evidence in the removed mass of what might have been Crohn's disease. My understanding is that things are still not entirely clear in terms of what the exact cause of all this was, although I'm pretty sure things started in my colon given years of occasional unpleasant gut issues that I had always chalked up to poor eating habits... as a change in habits always seemed to resolve whatever was ailing me. The thought of some sort of autoimmune bowel disease had never occurred to me until a flare-up several months ago was so painful that it propelled me to try and get to the bottom of what was causing the symptoms. I have always been real healthy in all other respects and had never been to a hospital except to fix a broken bone in my hand.

Everything went my way as far as the procedures and the recovery go. I'm doing great and I feel and look much better now than I have in months. I've been discharged from (in-house) physical therapy and will start hitting a gym next week. My recovery has been surprisingly rapid (I'm told) given that I went into the hospital looking like an escapee from a concentration camp due to a lot of weight loss. I could hardly stand to look at myself in the mirror and see a complete stranger staring back. I was anemic and required a blood transfusion and other IV drips before the colonoscopy and other procedures. My white blood cell count was 30,000 upon admittance. I was told after the fact by my mom that one of the nurses told her that all of the hospital staff on the floor I was on were all real worried about me initially.

As I mentioned, things from my hospital stay are somewhat hazy. I'm pretty sure I have a colostomy and not an ileostomy. I have a (single) stoma that is an inch or so to the right of and immediately below my belly button and a mucous fistula a couple of inches right above my belly button, which seems to indicate to me that the stoma is from my ascending colon. My rectum is still there and I seem to have fairly normal sphincter control in passing the occasional expected mucous from there. I'll have to confirm the details of what was done with the surgeon next week, but I'm pretty sure all that was removed from my colon was the area of the blocking mass, but I'm not entirely sure just how much of my colon was removed. I was told there were no signs of any bowel disease in the rest of my colon.

As far as a reversal goes, I was initially told that the timeframe for doing so would vary depending on recovery/healing progress, but would likely be in the neighborhood of 2-6 months. Now it seems like the surgeon is thinking 2 months after the initial procedure, which is only a couple of weeks away (yikes!). I had assumed that after a short recovery that I would be back to feeling good like I am now, but after finding this website and staying up all night reading about all the reversals with less than a happy outcome, I got both concerned and depressed. I was already not looking forward to having to go back into the hospital. Again: any advice would be greatly appreciated.

I'm 46 years old and am otherwise in excellent health, which I can confidently state after all the blood work, EKG and sonogram of my heart, X-rays and CAT scans. I've put on a healthy amount of weight since getting out of the hospital and my overall strength and energy levels are much improved, so I would be going in this time in a much improved state compared to my last hospital experience.

As a side note, I'm convinced based upon my own research into the experiences of others, as well as empirical evidence and even recent experiences of my own, that all these chronic autoimmune diseases of the bowel (e.g., Colitis, Crohn's disease, Diverticulitis) and other organs - not to mention a whole range of other types of diseases - can be effectively reversed through a change in diet, certain natural supplements, and other lifestyle changes (e.g., stress/attitude management, exercise).

Suffice it to say that conventional Western medicine is mostly clueless when it comes to the cure and prevention of chronic disease. As amazing as they can be in dealing with, for example, situations requiring emergency surgery, in general they get a failing grade when it comes to the actual prevention and curing of chronic diseases. What we have can't honestly be called a healthcare system. It's a sickness care system; heavy on surgeries and poisonous synthetic drugs that cure squat, simply mask symptoms, and frequently come with unhealthy side effects. That's where the money is, however. You can't patent a plant or a change in lifestyle. /stepping down from soapbox.
number9
Jan 08, 2014 3:52 am
As an update, I just had an uncomfortable meeting with my gastroenterologist. He wanted to put me on some pills that would suppress my immune system and that have some potentially seriously negative side effects like lymphoma and tuberculosis. I'm not taking squat that I haven't had time to research on my own, and would strongly prefer an alternate route. I realize this is a potentially long road, but I've been off all meds for weeks and feel great. Anyway, I was caught off guard and wasn't expecting to have this conversation with him until later down the road. I was unprepared. He was offended by me not taking his advice and thinking I know more than him. I was offended by being compared to another patient of his whose plan was to pray and leave things up to God (I'm not religious) and "do nothing" (you can bet I'll have a plan).

Him: You can't change your genes.

Me: Yes, you can.

Him: Despite what you've read on the internet, blah, blah, blah.

Me: Not the internet. In science books.

Him: Well, despite what you've read in books, blah, blah, blah.

Me: You can't change your genome, but you can change how your genes are expressed (which in general is absolutely correct and which he later seemed to implicitly agree with by admitting that the medical community doesn't know what environmental factors trigger the disease and the flare-up of symptoms).

And round and round...

He offered to recommend an IBS expert for a second opinion. He's more of a generalist and doesn't just treat IBS but a variety of GI issues. He mentioned the Mayo Clinic.... but aren't they basically going to react the same way when I tell them I would prefer to find a way to beat this without pharmaceuticals? I would like to continue to rely on a gastroenterologist for regular diagnostics and keeping track of progress.

I found out a little more about what was done to me from him reading the surgeon's notes. At one end they removed my appendix, and at the other end part of my sigmoid and descending colon where the blocking mass was. Not sure how much though. He seemed to think I had about half of my colon left. I asked him if this was my small or large intestine sticking out of me. Based on the consistency of my stool which he characterized as solid (it was more like oatmeal, is occasionally liquid and also occasionally has fairly solid chunks), he thought it was my large intestine. But the surgeon's notes mentioned an end ileostomy, which I thought would indicate the small intestine. He said it wasn't a normal ileostomy. My mucous fistula is from my transverse colon. Guess I need to hit the books and read up more on different types of ileostomies. I should be able to clear things up and get more detail once I meet with the colorectal surgeon in a few days.

Pathology's analysis of the blocking mass was that it was strongly suggestive of inflammatory bowel disease - either UC or Crohn's. No definitive diagnosis, however. The doc said he would basically treat them the same way (referring to meds) regardless. UC is what I had diagnosed myself as having before seeing any doctors and going into the hospital.

Am I crazy for thinking that I can beat this whatever it is without being on pharma-meds until I die? Especially those with such potentially serious side effects? I'd be really interested in feedback from those here who have managed to do so. Are all those who seem to be doing so simply to be dismissed as "anecdotal"? The reason so much of the evidence in favor of going a more natural route is anecdotal is because there are many promising areas of potential research that don't get funded because big pharma can't make a buck off them. I've done a shit ton of reading up on IBS and UC in particular and not all the evidence is anecdotal either.

Speaking in general and not as an "IBS expert", unfortunately, genes are everything for some people and conditions. For most people and most chronic conditions, however, it's only part of the picture.
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Primeboy
Jan 08, 2014 4:31 am
If you can get access to the Mayo Clinic, you're way ahead of the game coming down that proverbial "railroad line." The Clinic will give you solid advice. Accepting it will be your well-informed choice.
    PB
number9
Jan 08, 2014 4:50 pm
Thanks.    Any branch in particular?    Looks like they have gastroenterology branches in AZ, FL and MN.    I'm in TX.    There may be an insurance issue.    I think they take Blue Cross but may not take my particular plan.    I'll have to look into that.    I'm not opposed to paying out of pocket for things like diagnostics, consultations and trip-related expenses for unique and valuable advice (I would be disappointed to pay for the same advice twice).    My current gastroenterologist didn't seem to think that any IBS experts would recommend a med-free approach, which is a concern.

I apologize if I'm re-treading ground that has been covered elsewhere.    There's a lot to absorb on this site and I'm reading as much as I can as time permits.    I saw another thread after my initial post where you were mentioned as a valuable resource around here.    The Mayo Clinic was also mentioned.    There was some advice on that thread that I'm taking to heart: now that I'm healthy and feeling good and it's no longer an emergency situation, now is the time to slow down and make sure I'm getting the best advice before rushing into the next steps.

Thanks again.
lorraine-cooper1960
Jan 08, 2014 8:32 pm
Oh my, where to start! Prime Boy is absolutely right. If you can get an appointment at the Mayo Clinic, do it, even if it is just to compare advice. They are forerunners in almost every area of research, and if they don't know, you won't get any better advice from anywhere else.
They also advocate natural medications, either as an adjunct or instead of other pharmaceuticals.
Now I don't know whether to put on my nurse's cap or patient's gown, but I do feel I would do you a disservice if I didn't give you a forthright opinion, so here goes.
It is great to research a problem, but not self-diagnose. Doctors and nurses love informed patients, but hate patients who have researched on the net without the full picture or diagnosis. Having said that, print out the pertinent notes, highlight the areas you feel applicable, and take them along for your next appointment.
Contrary to popular belief, doctors don't push meds on patients for any other reason than they know or believe that it is in your best interest.
Also, there are many different kinds of specialists. You may be discussing your issue with the wrong one! Your very first port of call should be your Ostomy nurse. They are often more knowledgeable about ostomies than the surgeon who did it, as they deal with the nitty-gritty of living with an Ostomy. A surgeon is basically an emergency "plumber," removing the blockage while removing a margin for safety but taking as little as possible. They have the experienced eyes on the acute presentation of the problem, and they never take this lightly. They take an oath to first do no harm, then they join the pieces together.
A GI doctor is not the same as a colorectal doctor. They are complete opposite ends of the spectrum and are often mixed up. It would have been a colorectal doctor who operated, and I am surprised if that is who you saw couldn't answer your questions.
As for the genetic/immune system as a factor, this is a very specific field which I happen to have firsthand experience of. They are also different specialties concentrating on their specific area.
So lecture over, my advice would be to give the internet research a rest. Get the appointment for the Mayo Clinic. Ask to have consults with a GI doctor, a colorectal specialist, an immunologist, and a geneticist, and ask them to case conference your options. If you are suspicious it may have been cancerous, ask them to look at the pathology done. You then have all your bases covered.
I apologize if I have been harsh, but I would just like to point out one other thing: you are alive. Please don't waste this precious gift looking for weeds amongst roses.
I sincerely wish you well.
 

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jazzygirl52
Jan 15, 2014 1:38 am

I have had colitis/Crohn's since 13 years old.

I have seen the best doctors in NY and CA over the years and had to be on meds to control bleeding, pain, etc. as a cure and preventative.

I tried going off meds and eating a normal healthy diet - not good - ended up with a major bleed due to colitis and rushed to the hospital - then on cortisone for months to heal.

I was just diagnosed with colon cancer in 2011 and consulted with CA doctors and then Boston doctors who were best rated in MA at Dana Farber - awesome doctor and assistant professor at Harvard - so up on the latest least invasive surgeries - he still takes calls and answers emails directly and quickly.

Tested to try and determine Crohn's or colitis but it was indeterminable.

Take the meds - they heal and prevent recurrence. I would think Mayo Clinic or Dana Farber/Brigham Women's - they do incredible things.

number9
Jan 18, 2014 6:56 pm

Thanks for taking the time to reply. Sorry for the delayed response. I had to step away and take a break from all this for a while. Don't be afraid to put on your nurse's cap. I'm not looking for an echo chamber.

As far as "instead of", the Mayo Clinic's website seems to indicate that drug therapy or surgery are the usual treatment routes, and the drugs they list as treatment options are the same ones my gastroenterologist gave me as drug therapy options. Also, from their website:

http://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/basics/alternative-medicine/con-20034908

"Currently, no alternative therapies have good evidence supporting their use in treating IBD, but some that may eventually prove beneficial includeâ¦"

They go on to list probiotics, fish oil, Aloe vera juice, acupuncture, and curcumin. This is far from an exhaustive list and is only a cursory/superficial treatment of the topic. People should do their own due diligence and actually read the studies for themselves. Personally, I wouldn't look at any of these listed options as a single magic cure-all pill, but think at least some (I'm not familiar with acupuncture) are worth considering as part of an overall, integrated approach.

Quote:
,having said that print out the pertinent notes, highlight the areas you feel applicable and take them along for your next appointment.

Yes, good advice. I will be much better prepared next time. I had already started working up a document.

I think you're basically correct. The problem lies in the fact that most doctors operate within a framework - a box if you will. That box is framed, for example, by the FDA; a regulatory agency that has been captured by the very industries that it's supposed to police, and which is a "revolving door" for ambitious, pole climbing apparatchiks looking to be rewarded with a sweet industry job after their stint as a "public servant." Trusting the FDA is foolish and leads one to follow all sorts of bad advice; doctors included. Another side of that box that doctors operate within is the AMA, which is essentially a self-interested cartel with a notoriously bad track record of not policing its own members (medical errors - many from repeat offenders - are a leading cause of death in the US).

That said, I have followed the advice of my doctors up to this point. The ostomy was ultimately my decision. I was given the option after the (attempted) colonoscopy and being admitted to the hospital of putting my colon back together after the resection instead of going the ostomy route, but they convinced me it was not the safest option. I'm not immune to reasoned argument.

Quote: Also there are many different kinds of specialists, you may be discussing your issue with the wrong one! Your very first port of call should be your ostomy nurse, they are often more knowledgeable about ostomies than the surgeon who did it as they deal with the nitty-gritty of living with an ostomy.

I had what I consider a really good wound care nurse for a time (which I think is the same thing) and the lack of issues I've had with my ostomy I attribute to her.

I like my colorectal surgeon a lot (it was my gastroenterologist who seemed a bit confused about what was done) and there is a definite trust factor there, especially given his role in getting me where I am today (alive and healthy). I met with him again recently and learned that - along with my appendix - he only removed nine inches of my colon; a transitional piece of my sigmoid and descending colon. I still have 85% of it left. The temporary ileostomy from my small intestine is allowing my colon to rest/heal. He seems to think I'm a prime candidate for a reversal and that the affected areas tend to respond well to surgery. He said it's not uncommon for people to go on to have no further issues long-term after this type of surgery.

As far as diagnosis goes, he seems to think Crohn's, based on the "spasmodic" nature of how it affected both ends of my colon and skipped a large area in the middle... but that there will never be a 100% definitive diagnosis. He does at least want me on some type of drug therapy short term after the reversal surgery, which I'm open to. There is an alternative prescription med that I'm going to want to consider in lieu of the FDA-approved options on offer from the medical cartel. It looks promising and doesn't come with the potentially awful side effects. It's past its period of patent protection, so no surprise that it's not offered as an option by the usual suspects.

Quote:
As for the genetic/immune system as a factor, this is a very specific field which I happen to have firsthand experience of, they are also different specialties concentrating on their specific area.
So lecture over, my advice would be to give the internet research a rest. Get the appointment for the Mayo Clinic. Ask to have consults with a GI doctor, a colorectal specialist, an immunologist, and a geneticist and ask them to case conference your options...

Good advice regarding the Mayo Clinic and seeking the advice of specialists, although I see no reason to stop researching on my own. These aren't mutually exclusive activities. A research paper is no less valid because it was read on or downloaded from the internet. I'm also an adult who is fully capable of separating the wheat from the chaff, educating myself, and forming my own opinions. In considering options, I certainly don't want to be limited to the same box that governs the medical cartel as we ultimately have different long-term goals.

That was my initial fear, but there is no sign of cancer at this time, either in the mass they removed or in the rest of my GI tract. The rest of my colon and my small intestine looked good.

Quote:
I apologize if I have been harsh, but I would just like to point out one other thing: you are alive. Please don't waste this precious gift looking for weeds amongst roses.
I sincerely wish you well.

Thanks for the well wishes and again for the advice. Believe me: I'm very happy to be alive and healthy and don't discount that fact. I've put on 20 pounds since getting out of the hospital and am looking to add more lean body weight from a regular exercise routine I've started. It's been a while since I've felt well enough to hit the gym.
number9
Jan 19, 2014 2:41 am

Right after I made the above post, I came across the below passage in a book I'm reading, which relates to this discussion. I think my gastroenterologist, who thinks we can't change our genetics, could use basic lessons in both nutrition and biology. I almost expected him on my last visit to whip out a brochure with the FDA's nonsensical food pyramid on me.

Bold emphasis mine. This is quoted from Dr. Perlmutter's book Grain Brain: The Surprising Truth About Wheat, Carbs, and Sugar--Your Brain's Silent Killers. David, by the way, is a board-certified neurologist and a fellow of the American College of Nutrition - the only doctor in the United States with both of these credentials. He's also a founding member and fellow of the American Board of Integrative and Holistic Medicine.

lorraine-cooper1960
Jan 19, 2014 2:26 pm
Well, I am glad you have taken control and I didn't mean to demean your knowledge or information. You have a steady mind and by reading your post, you have definitely done your due diligence.

I have had a long-term life-threatening illness for the past 15 years or so. I have had to have immunological treatment as my body has, for some reason, stopped fighting infections and viruses, etc., but turned on my own organs as foreign bodies, leading to kidney damage, first-stage heart failure. Multiple operations for cancer and, of course, my bowel, stomach, and intestines. So I hear you when you say that the FDA likes boxes to fit people into.

In Australia, the medical system works differently from the American medical system where you are basically held ransom by your health funds and their agreement to any treatment options you have.

We have a free hospital system and a private one. Luckily, I have top private cover and the health funds here cannot, by law, change your coverage to protect the rights of the patient.

You are a very lucky person in that you are able to sort through the information available and come to your own conclusions.

My immunologist told me at the point of diagnosis that I had many changes to make and that if I wanted to get through and live, I had to take my own life in hand to go to whole natural foods. Foods that have not been processed or genetically modified, and know where my food and drinks come from. I have cut out all wheat and there is a very good book called "The Wheat Belly Cookbook". It's actually more of a teaching aid than a cookbook, but I highly recommend it. And basically, to keep it natural, cook from scratch using good ingredients and to make up enough food for several portions that can be frozen and eaten when hungry so that you don't grab the first thing in sight. He also advocates making healthy snacks and storing them and juicing fruit/veg as it is so easy for the body to digest and absorb, as well as soups.

There is one other thing that may help you as you definitely appear to have immunological inflammatory problems, and that is an intravenous treatment called Intragram. It is given in either an oncology or hematology department and is made up of the immune factors that have been removed from blood donations and reserved for those with severe immune conditions. It is safe. It is cross-matched and carefully managed and has little or no side effects. It may not be of use to you, but I'm throwing it out there as without this product every three to four weeks, I would not be here now.

Good luck, keep fighting, and God bless.
Past Member
Jan 19, 2014 9:20 pm

Hi number9

Thank you for starting this thread. I'm not looking for an "echo chamber" either, but it does make me feel less alone when I read views which are similar to my own.

I had to face some pretty unpleasant attitudes from hospital staff when they realized that I was not going to be steamrolled into tests and treatments that I didn't want. It's true that I don't have any in-depth medical knowledge and expertise... but I DO know what's best for me as a person, and what's best for my own quality of life. Little or no importance is placed on what may have caused an illness or condition in the first place. The medical profession seems to be purely focused on bombarding an ailing body with toxic chemicals, or radiation etc. It makes no sense to me at all.

One of the things which horrified me was the appalling diet fed to hospital patients post-operation, when they are in such a fragile and vulnerable state. It was sugar-laden rubbish, and my personal belief is that sugar is a poison which feeds cancer and suppresses the immune system. And yet seriously ill people are fed it as a matter of routine. It's madness.

Thanks again for your posts.

Cecille
Jan 20, 2014 1:11 am

To Number9
For your interest, I had 90% of my colon plus 15% of my small intestine removed in 1982, with immediate reversal (i.e. the sections of the intestines were joined back together immediately). The operation was due to UC and Crohn's Disease which I had had for more than 10 years.

This operation I had cured me and I took no medicines for UC or Crohn's whatsoever. Also, I could eat and drink whatever I liked except red wine and peppers.

After a terrible accident which ruptured my intestines in 2009, I now have an ileostomy but am hoping to get it reversed soon.

number9
Aug 10, 2014 2:35 am

Thanks to all who replied. I thought I'd give an update on my situation.

I had my reversal surgery two weeks ago and everything went as well as it possibly could have. There was plenty of colon left to reach and re-attach to my ileum. The colorectal surgeon had an opportunity to get a good look at my colon and the rest of my bowel and everything looked healthy and all healed up. He used the word "pristine" and said he's not going to argue with whatever it is I'm doing. I just had the last of my staples and stitches removed and my surgeon said he wished he had 10 patients that heal as fast from surgery as I do. The women say my scars are sexy, but I think my future career as an underwear model is over. My bowels are working fine and just about normally (the expectation is that it will take a few months for my rectum to loosen up - it's kinda stiff from not being in use for a while). Consistency is normal with a frequency of three times per day, which is expected to drop to twice per day in a few months.

I'm going along with the surgeon's diagnosis of Crohn's Colitis, due to the fistulizing and the skip regions in my colon.

So far, I have not taken any of the pharmaceutical drugs my gastroenterologist was wanting to put me on, although I remain open to anything that I may need to rely on in the future. Fistulizing Crohn's is nothing to screw around with, as I learned the hard way. Please do your own due diligence.

I did start a regiment of LDN (Low Dose Naltrexone) @ 4.5 mg nightly on my own initiative. I did not bother with a prescription and get it straight from a compounding pharmacy. I found the pilot studies regarding LDN and Crohn's convincing (in aggregate the conclusion is that it is at least as effective if not more so than biologics or conventional immunomodulators, without the serious side effects... not to mention a lot cheaper). It took about three months after first starting on the LDN for the inflammation in my colon to go completely away.

Since my initial ileostomy surgery (along w/ partial colectomy, appendectomy and repair of a fistula) I've had a colonoscopy and a sigmoidoscopy. The colonoscopy showed moderate inflammation in my sigmoid colon and by the time I had the sigmoidoscopy a month later the inflammation was gone. Regular blood work done during this time showed optimal markers for systemic inflammation and sed rate.

Regardless, I seem to be in remission and am in the best health I've been in years, including bowel health. Whether it was the surgery that brought about the remission --or the LDN, or the sometimes (seemingly) spontaneous and random nature of the disease -- I don't know. And neither do I know what the future holds. No regrets so far and I'm just grateful, at this moment in time, for getting my life back.

Other daily supplements: Curcumin (the BCM-95 formulation referenced in the medical literature), Omega-3 fatty acids (1400 mg daily of EPA and 1000 mg daily of DHA), 1000 mg Long-chain polymannans and other healing components derived from Aloe vera (not Aloe from your local grocery store), 4,000 IU vitamin D, Vitamin K, multivitamin (derived from whole foods, not synthetics), the amino acids L-Glutamine and L-Carnitine (for gut healing). I also take an advanced probiotic (Floracor-GI) with a variety of beneficial strains, prebiotics, and enzymes that help keep the population of Candida albicans (yeast) in the gut to a minimum. Last but not least, my vaporizer gets a good daily workout from all the (high grade) Cannabis that it gets fed with.

As far as my diet, I avoid wheat/gluten like it's the plague, and only eat other types of grains sparingly. Probably more of a "Paleo" diet than anything, although I'm not strict about it, and splurge occasionally. I try to eat simply and cook for myself as much as possible, don't worry about fats (especially the "good" kind of fats), limit overly processed foods, and keep my intake of sugar and carbs in general to a minimum. Basically I do mostly the opposite of what the FDA recommended in their idiotic "food pyramid", and still recommends. This year I plan to start a vegetable garden using natural/organic methods.

Another thing I did which may or may not have had an impact is that I moved out to the country, and away from the pollution and reliance on a city water supply. Call me crazy, but I prefer the peace and quiet of nature to sitting in traffic and inhaling smog and exhaust fumes. My water now comes from my own deep well and is free of the toxins and pollutants found in your typical city water (I've had it analyzed in a lab). Comparing disease patterns in rural versus urban environments, there certainly seems to be an industrial factor to these inflammatory bowel diseases. My best guess in reviewing the medical literature (which is, frustratingly, all over the place) is that it's a complex disease with both genetic predisposition and environmental trigger factors that come into play.

Best of luck to everyone struggling with bowel issues. Thanks again to all who chimed in.

Cecille
Aug 10, 2014 7:06 am

Thanks so much for an absolutely marvelous description of your reversal. It's rare to encounter someone so erudite on this site! Please keep us informed of any further developments because I am sure many of us will find your situation inspiring and interesting. I am thinking seriously now of having a reversal myself because I have developed a serious "ostomy hernia" which will have to be treated and I might as well have the reversal at the same time.

number9
Jul 08, 2015 1:43 am

Well...it's been a year since the reversal. I thought I'd drop in and give an update. Can't believe how fast the time has flown.

I did develop a minor hernia post-surgery. It's not bothering me and I didn't even realize I had one until my gastroenterologist pointed it out to me. I plan on doing something about it this year, but am in no hurry. I just started a new job and need to focus on that for the time being.

I did have a Crohn's flare up in December over the Christmas holidays. Felt like everything was spiraling out of control again. It really sucked. I had to resort to a few weeks of Prednisone to knock the symptoms back. The pharmacy screwed up and printed the wrong instructions on the pill bottle and had me on triple the dosage I should have been on, which sent me into a wild manic state. That was quite an experience, that I'm still paying for (literally). LOL!

I'm now taking 50 MG daily of 6-MP, and have been in remission for about seven months. I'm not exactly thrilled about being on these kinds of meds, but the 6-MP does seem to be doing the trick and so far there are no side effects as far as I can tell, other than perhaps some occasional tiredness... and I'm not even sure whether or not to attribute it to the meds. Could simply be lack of sleep due to a bunch of other (non- health related) crap I've been dealing with. No way do I want to risk ending up back in the hospital, so I view the 6-MP as the lesser evil. I seem to be in very good health at the moment, and the surgeries from 2013 and 2014 are a fading memory, so I'm counting my blessings.

That's it for now. Still no regrets on the reversal.