What's the first step?

The next step is to find the very best colorectal surgeon you can. For some this is conveniently located. For others it can involve travel, which is a challenging way to have surgery, but you're going to live with the guy's work for a very, very long time. The surgeon should perform plenty of J-pouch surgeries and be well recommended. Your gastroenterologist can help get this started. Then you schedule a consultation to discuss options (e.g. How many stages: 1, 2, or 3?) and get comfortable that you found the right one. Good luck!

^ echo and agreed. curious why you are 85% convinced, but as you are, your GI ideally would be the most logical source of referral, as ideally you want your GI and surgeon to be able to work together to manage your healthcare.

Thanks, both of you. I'll keep all that in mind. 

DeweyJ, in a way I'm more like 95% certain; but the thing is that I haven't had professional consultations about it or anything, and I figure there's a little possibility that when I do I'll hear something that will completely change my thinking. So I figure it works out to about 85% certain.

Hi again.

My progress has been slower than I would have liked. But I did at least talk to my GI's office (this took a few tries, as a few times I just got a recording). I thought that would lead to them having me come in for an appointment; but instead what she said was "When a patient wants to have a colectomy, we give them the number of Dr. _____", who is a surgeon. (I haven't called him yet.)

One other thing, though: she expressed some skepticism about whether it would be decided that I could have a colectomy. Naturally, that concerns me.

Scott's advice... Ditto.  Ditto.  And stay away from Google! 

Lol. 

Here's how I arrived at the surgery.

I was diagnosed with UC in 2000 after complaining to my primary care physician about chronic abdominal pain for about 6 months and having gone through the typical initial trial and error before being referred to a gastroenterologist and having a colonoscopy done. I was put on sulfasalazine meds which put everything into remission for about 15 years. Occasionally I would get the symptoms, my GI would up the dose temporarily and sometimes add prednisone until I went back into remission.

In year 15, I was not responding to even high doses of sulfasalazine and prednisone, so we then went to the next step - biologics. We started with Humira which seemed to work; that is until I banged my shin and got a bone infection that almost cost me my leg. At that point, I asked my GI where things will be in, say, 3-5 years in any event. And that's where we started talking surgery.

I was referred to a surgeon and we discussed the procedure, the risks, the journey, and just about everything else. He did another colonoscopy and determined that this was, indeed, the right approach.

I went into this with my eyes wide open, and made sure that everything was in order with insurance, work schedule, and home (all my affairs).

I underwent the procedure in November 2014 and the second was in January 2015.

It's been a long journey with a couples of set backs, but of the type where it was one step back and two steps forward. I could not have done this without the fantastic support of my family, friends, and co-workers. And even though I did not have any really major issues, I had a lot of the healing issues (temporary ostomy site skin breakdown, ostomy bag leakage, ostomy wound site healing issues, butt burn, hemorrhoids, dehydration, etc.), but nothing like some of the others who've had far worse.

At 10 months post-surgery (November 2015), magic happened. I was no longer having issues! All the symptoms associated with the recovery disappeared literally overnight!

I am now 13 months out, completed the one year sigmoidoscopy to check the pouch (my surgeon liked what he saw) and, with the exception of the more frequent bowel movements (all part of the expectation due to J-Pouch capacity), I am fully pain-free and my scars are now starting to fade. The only time I get pain or very loose movements is if I eat something that disagrees with me (chocolate is a laxative and anything spicy is a killer).

So I hope this helps answer your question - primary care physician referral to gastroenterologist, GI referral to surgeon - and all work together as your medical team.

Hope this helps.

what I was curious about was your process of treatment prior to your arriving at the 85% decision. I mean why a colectomy, have you been through the gamut of meds, is your GI and IBD specialist who would be intimately familiar with not only the currently available treatments but ones in the wings working through the approval process. Is your quality of life with your UC so bad that you really should be considering undergoing a life changing surgery, after all you are losing a major organ. granted all of us here who have gone through it are examples of how you can still live but candidly while I would make the exact same decision again, because at the time I was 4 weeks in the hospital and no then medically available treatment was working and I was only getting worse, I wish I had never had to have made the decision to begin with. Have you exhausted or even tried any of the biologics?

what I am really trying to get at is, as I have seen this happen on generic IBD sites, people are fed up with meds, with dietary restrictions, with flare ups etc, and they hear of a few anecdotal stories of colectomy patients and a light bulb goes off and they declare that's it I'm taking out my colon.

read along the many posts on here and you will see how sometimes very challenging issues arise post surgically. do we all hope for the perfect outcome, with no complexities, absolutely. is it guaranteed? no it is not. that's doesn't also mean that you are guaranteed to have issues, problems etc, but you have to be prepared and understand that its not such a simple thing, and most importantly you cant go back and say you know what this isn't quite what I expected, can I have my colon back and maybe I will try those other meds.

I jumped to a couple of conclusions about your process which may be completely off base and i mean no offense, but I do hope that you've considered not only the upside but also the downside. what alarms me is your GI's office response to your question. I agree I would think the GI would want to sit down with you to flesh out your thinking. To make it sound akin to elective plastic surgery strikes me as odd.

I will also say that it amazes me how often I hear a patient who is on their first or second biologic say I'm running out of options. 6 years ago that might have been true. not so today. of course if your colon is so riddled with active disease that you spend your days in agony between the toilet and your bed then that's an entirely different story. but then I would think youd be at 95% certainty.

as I mentioned I have taken some liberties with your process in the absence of information, I mean no harm, I am just expressing reservations based on many similar declarations that I have seen.

Mysticobra posted:

Scott's advice... Ditto.  Ditto.  And stay away from Google! 

Lol. 

Interesting.

Care to elaborate about Google?

deweyj posted:

what I was curious about was your process of treatment prior to your arriving at the 85% decision. I mean why a colectomy, have you been through the gamut of meds, is your GI and IBD specialist who would be intimately familiar with not only the currently available treatments but ones in the wings working through the approval process. Is your quality of life with your UC so bad that you really should be considering undergoing a life changing surgery, after all you are losing a major organ. granted all of us here who have gone through it are examples of how you can still live but candidly while I would make the exact same decision again, because at the time I was 4 weeks in the hospital and no then medically available treatment was working and I was only getting worse, I wish I had never had to have made the decision to begin with. Have you exhausted or even tried any of the biologics?

what I am really trying to get at is, as I have seen this happen on generic IBD sites, people are fed up with meds, with dietary restrictions, with flare ups etc, and they hear of a few anecdotal stories of colectomy patients and a light bulb goes off and they declare that's it I'm taking out my colon.

read along the many posts on here and you will see how sometimes very challenging issues arise post surgically. do we all hope for the perfect outcome, with no complexities, absolutely. is it guaranteed? no it is not. that's doesn't also mean that you are guaranteed to have issues, problems etc, but you have to be prepared and understand that its not such a simple thing, and most importantly you cant go back and say you know what this isn't quite what I expected, can I have my colon back and maybe I will try those other meds.

I jumped to a couple of conclusions about your process which may be completely off base and i mean no offense, but I do hope that you've considered not only the upside but also the downside. what alarms me is your GI's office response to your question. I agree I would think the GI would want to sit down with you to flesh out your thinking. To make it sound akin to elective plastic surgery strikes me as odd.

I will also say that it amazes me how often I hear a patient who is on their first or second biologic say I'm running out of options. 6 years ago that might have been true. not so today. of course if your colon is so riddled with active disease that you spend your days in agony between the toilet and your bed then that's an entirely different story. but then I would think youd be at 95% certainty.

as I mentioned I have taken some liberties with your process in the absence of information, I mean no harm, I am just expressing reservations based on many similar declarations that I have seen.

Hi Deweyj.

I've been mulling over your words. But first let me stress that I wasn't reporting the complete conversation I had with the Dr's office; I was just making the point that she didn't have me come in for an appointment; but instead said something like "When a patient wants to have a colectomy, we give them the number of Dr. _____", who is a surgeon. I don't actually think she made it sound akin to elective plastic surgery at all. (I should have posted here that same day, while the whole conversation was fresher in my mind.)

I've been on (am on) one biologic, Remicade (thanks to my current insurance which is great, but I'm not sure what my coverage will be like in a couple years) and it has been great for my colon, when I get it as often as I should (every 8 weeks). But I have come to believe that there's too much of a conflict with my immune system. For example, I recently had a cold for two solid months, and about 10 different remedies, including antibiotics, wouldn't make it go away. I am, hopefully, over it now; but I'm 6 weeks overdue for Remicade, and my colon is getting bad (though not comparable to what I recall from before I went on Remicade).

That's all for now, but I'll return later. 

Thanks again!

You're all aware of the death of The Eagles singer/songwriter Glenn Frey not too long ago. If not, see: http://hollywoodlife.com/2016/...ies-health-problems/ . Glenn had UC and rheumatoid arthritis for years and was taking a biologic, according to his manager, and apparently died from complications due to pneumonia (http://hollywoodlife.com/2016/...umonia-irving-azoff/)

We also know that UC, Chron's Disease, and rheumatoid arthritis are related due to all being autoimmune diseases.

As we are also aware, the treatment for these kind of autoimmune diseases are:
1) Analgesics and antibiotics to suppress the pain and treat the symptoms
2) Aminosalicylates (5-ASAs or sulfa medications) to decrease inflammation in the lining of the intestines.3) Nonsteroidal anti-inflammatory drugs, or NSAIDs, and corticosteroids (such as Prednisone) to reduce inflammation.
4) Immune Modifiers (Immunomodulators) and biologics to suppress the body's immune response so that it cannot cause ongoing inflammation.

The last one is what Glenn was on, according to his manager. We don't know which biologic or biologics he was on (Actemra, Cimzia, Enbrel, Entyvio, Humira, Kineret, Orencia, Remicade, Rituxan, Simponi, or Tysabri), but in all of these, the result was his autoimmune system was suppressed, so when pneumonia set in, even though he was treated with antibiotics, he succumbed to the infection.

That's what I encountered when I was on Humira when I developed a bone infection after hitting my shin and was the final straw that convinced me that I needed to take the ultimate journey to where I am today.

It came down to weighing the risks of continuing the medication path, the very real risk of death on the operating table with a major surgery, the risk of developing complications during recovery and healing, and the reward of a life without pain and bleeding and ever-increasing risk of colo-rectal cancer as time progresses, then making the decision with eyes wide open.

The second link apparently did not take. I'll try again: http://hollywoodlife.com/2016/...umonia-irving-azoff/

Otherwise, do a search on Glenn Frey biologics and look for the hollywoodlife.com link.

I have been on biologics for about 10 years now. First Remicade, for several years until it failed me, then Humira for 8 and counting. At first curiously my formerly aggressive immune system which had kept me from catching colds in spite of living in NYC and traveling frequently on the mass transit, sure enough failed and I began to catch severe colds that lingered. several of which I fought the lingering phlegm by taking a short course of abx, the oft used Zpack. but lately (knocking on my wooden head) the past couple of years that's mitigated some, probably now 2 colds a year. And yes there are many experiences with infections but there are just as many without. I would expect that there are more without on balance but I couldn't swear to it. managing an incipient infection or even a cold might have much to do with ones success or failure, or of course one could have some unusual and rare crazy situation, like the various flesh eating infections that zipliners encounter sometimes, or should I say rarely. But that story is akin to the cancer risk, sure the risk is 4 in 10,000 but if you are one of those 4, that statistic no longer matters.

Clearly here by and large we have a self selected population, often people who don't have perfect situations. I don't disagree there is a degree of risk with Biologics. But I also think its dangerous to compare the sad passing of Glenn Frey, we don't know all of the facts. There's been some speculation that he was in between surgeries which if true would have made him more susceptible to illness generally. Also a long term stay in the hospital unfortunately would also expose him to HAP - hospital acquired pneumonia, my father succumbed to that just as he was about to leave the hospital at the age of 87 after months of battling a severe cold.

Kingbrand at the end of the day I can appreciate your frustration, I just hope you also realize that a colectomy and installation of a jpouch does not return you to the days before UC ravaged your body. to me this is the most important thing, if you understand that missing a major organ will alter your life, hopefully not negatively, then that is key. if, however, you believe as I think some do (I'm not saying you do) that its a simple snip snip and I can resume my life as prior to UC diagnosis then that is very different.

importantly I will repeat I am not against surgery, I just hope that people make the decision eyes wide open. if you decide to get cut, good luck and all the best to you, I hope whatever your journey that it is a straightforward one.

Hi again. My apologies to everyone for not having updated this thread about my situation.

A month or so ago I scheduled a consultation with the surgeon (that I believe I will go with). It's been a bit difficult waiting (everyday I have pain, urgency, and bleeding) but now I'm just days away from the consultation.

I didn't re read everything but one thing caught my eye. I realize some docs will do so, but I never once have ceased or suspended by biologic treatment be it Remicade or Humira because of a cold. I might have been lucky in that my colds were just malingerers but never advanced to cause bronchitis or worse ie pneumonia, so I am puzzled when docs do this. unless it is fear that they expose you to that possibility ie worse case scenario.

Thanks to both. Yes, I'll be careful for misinformation.

Naturally, I'm trying to be prepared as best I can for when I go in for the consultation. There are many webpages giving information about consultations in general, but any particular considerations about consultations for a colectomy? (One has already been mentioned: the # of stages question.)

P.S. Somebody online actually said to make sure to bring your files. Am I right in assuming that I don't need to worry about that? (I certainly don't have my files.)

Re: medical files

You don't really need to bring them with you. You can call the consultant's office to see if they already have them, or call your GI and ask for them to be sent. But, the surgeon does not have time to pour over hundreds of pages. He will just look at the main reports. Generally, he can request what he needs from your current provider.

As for yourself, it would be useful to the consulting surgeon for you to have a list of your current meds, and past meds you have tried. Also, a brief history of when your symptoms started, diagnosis and treatments, including any hospitalizations, transfusions, etc.. Test and imaging results that led to your diagnosis are useful. Also list any other ongoing illnesses and medications. Family medical history is helpful too. You can just write it down like an outline and it will help him in his evaluation. It is hard to remember details when you are in this sort of setting.

The surgeon will want his own battery of current labs, chest x-ray, EKG for pre-op evaluation so you don't need that info.

As for the consult itself: I like to find out when the surgery can be put on his schedule, which facility it will be at, and if he has a specific team that may need preapproval from my insurance. It is also good to know the ballpark estimate of time in the OR, post op hospitalization, and home recovery. You can ask about his preferences for pain management (epidural, pain pump, on demand, etc.). The number of surgical steps depends largely on the surgeon's preference, then your condition and intraoperative findings.

Jan

From my experience of hospital admissions, appointment and that of the many patients I've met along the way (also with UC) it's normally our desire to keep our colon, regardless of the illness and its debilitating symptoms, as we dread the thought of a life with a colostomy bag.

I'm in the Uk, maybe it's different, personally I believe it is; as through-out my battle with UC, a J pouch proceedure was never ever mentioned.

Many times during my trearment my Consultant often suggested and recommended the removal of my colon; but I refused and IV & oral meds eventually brought my illness under control.

It was always explained that with my colon removed I would  "technically" be cured but I would need the use of a colostomy bag.

I certainly didn't want a colostomy bag at such an age.

It was only during my last flare up, that without the emergency removal of my colon, I would have died.

My surgical team did mentioned the option of reconnection but I believe this was only said to convince me to consent to the emergency surgery.

Since the creation of the stoma and use of colostomy bags, I've met many a patient just like myself; who's reluctant to have surgery for the very same reasons.

Whenever, I met a patient like myself, suffering from flare ups, struggling to cope on meds and reluctant to have surgery through the fear or a dislike to a colostomy bag, I would always mention how I wished I'd had my surgery and the colostomy much earlier.

I struggled, hiding my symptoms, trying to appear normal, all because the thought of a life with a colostomy bag was far worse; I was so wrong.

Back to yourself; it appears you're opting for surgery rather than on the recommendation of your consultant or medical team ?

Although I struggled for a few years prior to the removal of my colon and the flare ups were terible, I did respond very well, for many years on meds.

I only had 3 flare ups and I lead a relatively normal life in between; if I hadn't stopped taking my UC meds when I did, then maybe my 3rd flare up may have never occurred.

I suggest you explore your options on meds until your consultant or medical team recommend surgery.

I have a full functioning J Pouch now and loving it.

Thanks everybody. I'll let you know how it goes.