Big decision - ileostomy

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Amen to that, @ltapilot!! It would be impossible to go through all of those years of life without having to take a big dose of adversity, as you say. As we mature we learn how to weather the adversity and how to adapt so we don't become completely cowed by them. People like us know that there "ain't no such thing" as a perfect person and even if there were, you wouldn't want 'em anyway! At least I wouldn't! I agree it's about enjoying the good things that come your way and working together to get through the bad parts and both learning from it. Someone who looks on relationships in that light is mature although not necessarily chronologically older. To me, someone who is "damaged goods" would be more attractive as she has weathered what life has thrown at her and knows how to best support you and love you back.
And by the way, I'm fa-a-a-a-a-a-r from being "factory fresh off the shelf," myself!!

 

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I think I'm going to write a note to my gastroenterologist explaining that I'm not comfortable with just doing coloscipic surveillance.

For one thing, if I don't have a colonoscopy until next June, that's barely more than we've been doing - of were going to do two or three a year, starting with a nine-month interval send like an odd choice.

For another, my last colonoscopy cost me nearly a week of downtime from work - I was fasting Monday and not at my best, Tuesday I was out with the procedure, and I was still feeling drugged from the anesthesia Wednesday and into Thursday. I can't afford to take two or three weeks off work every year for colonoscopy.

Finally, I'm not comfortable with the ability of colonoscopy to pick up cancer before it's very advanced. Colon cancer in UC often occurs in flat lessons that are invisible under colonoscopy, rather than in polyps that are relatively easy to spot.

What I'm going to ask my doctor for is to meet and discuss the pros and cons of removing my colon, and try to reach a consensus on the best part forward. Unfortunately, based on past experiences with this doctor, I have a feeling he's going to just tell me that if I want a colectomy, he'll give me a surgical referral. That's not really what I'm after - I want to hear his opinions on the upsides and downsides of surgery versus surveillance. I can read the published papers and talk about the statistics, but I'm an engineer, not a doctor, and I don't have the clinical experience to put the statistics into context with clinical practice.

I think the eventual outcome is that I'll get a colectomy, but I want to know the downsides to that before I let them cut me open and take out various parts.

If I have my colon removed, the next choice will be J-pouch and keep my anus, Koch pouch or Barnett ileostomy and lose my anus but try to maintain continence (those procedures create an internal reservoir that's emptied through a songs using a catheter) or go with a Brooke ileostomy and give up both my anus and my continence so that I'll need to wear a pouch. All of those have complications in patients with liver disease - J pouch worsens outcomes of liver transplantation, and the others can lead to decompensation of liver cirrhosis and drastically hasten the need for a liver transplant. But then, perhaps getting to where I need a transplant a bit sooner will provide some protection against bile duct cancer, which is the biggest concern with my particular liver disease.

I really don't know. I don't want to go through any of this crap, but my body is dictating otherwise.

 

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Hi @ltapilot. You have a big decision, that's for sure. You want to hear your surgeon's opinions on upside and downside of surgery versus surveillance. Write down those concerns and try to put it into the form of a list, or even an outline. Just tell the doctor point-blank what you expect from you r talk with him. If it were me I would insist on an extended appointment because you're leaving nothing to chance. Also I would tell him just plain statistics don't mean a durned thing and I want to have something that would translate those statistics relevant to my case in plain English. And if discussion leads to colectomy insist on a frank discussion on what the downsides are. With the various possibilities you presented us as for J-pouch, ileostomy or other options do ask about complications of each procedure for someone with liver disease. You have a right to the best-informed opinions from the doctor as you want to maximize the chances of success.
If I were you I'd go ahead and write that note that you're uncertain about coloscopic surveillance and request a good amount of time to resolve your questions and potential issues. I hope this helps and we here all want you to have as uncomplicated a journey as possible through this phase you're entering.

 

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Hi, I’m late to the party on this. I had both a colostomy and ileostomy for almost 9 months. I understand from reading your thread that this would be permanent and not temporary as mine was. Before I had the surgery I was having fevers twice a month and life was difficult. I am grateful that I opted for the surgery. This is a wonderful site with caring and helpful members. There was another site equally as helpful called inspire.com where they have threads that pertain to the colostomy and ileostomy community. Everyone’s issues are similar and different in so many ways. These are great support groups full of supportive members. I wish you all the best in your decisions

 

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@ThatFLGuy sounds like you should join inspire.com. Your many bowel problems will be better resolved with people in your same circumstances.

 

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I've actually been a member of a PSC support group on Inspire for many years. It's a great community, but one thing I've found in general with PSC forums is that little of the information pertains to me. I've been diagnosed with PSC since 2001, which is a very long time to survive without a transplant, and evidence of it goes so the way back to the early 90s, which is an extremely long time to have had it. It seems to have progressed much more slowly in my case than in most, and most of the PSC groups tend to be focused on newly-diagnosed people (which I'm not), people who are about to have transplants (which is impossible to predict, but I'm guessing might still be ten years away if it doesn't decompensate after ileostomy surgery), and very sick patients (I've been hospitalized perhaps a dozen times for accepting coalfield and other complications, but beyond that I'm not really all that sick). Problems that involve severe itching and fatigue for ten years don't seem to be very prevalent, so I can't get much help with my problems, and I can't offer much insight into others' problems.

Meanwhile, we have a really amazing group here, and it's a group of people that really understands bowel problems. Leaking still into a diaper isn't quite the same as leaking stool into a bag, but many of the issues are similar. That's the biggest reason I opted to post the thread here.

That isn't intended to be a dismissal of inspire - I've gotten a lot from their forums over the years, but this sure resonated with me on this particular issue.

 

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An update:

I wrote my doctor and told him that I was uncomfortable with the ongoing surveillance, and asked to set up a meeting with him, a colorectal surgeon, and me to discuss options and the pros and cons of each choice. He wrote back a slightly snippy email telling me that colectomy is not recommended for low-grade dysplasia, but that he understands the distress of having to do so many colonoscopies and offered to refer me to a colorectal surgeon.

The thing is, the American Gastroenterological Association's recommendation for UC with LGD is actually to make the choice individually with each patient, after considerable discussion with the gastroenterologist, the patient and a surgeon. It's not accurate at all to say that surgery isn't recommended - my PSC puts me at much greater risk than other UC patients, as well as my long history of extensive colitis.

He earned me that the only colorectal surgeons here take a long time to get an appointment with. That really complicates my desire to have a conversation with ask my doctor's, rather than just get bounced between various providers who all tell me something different.

My fear is that it'll take months to get in to see the surgeon, and then either they won't want to do surgery because my gastro isn't on board with it, or they'll want to do surgery because that's what surgeons do. I want the decision on surgery to be based on what's best overall for my long-term health, not the whims of a doctor.

So frustrating.

 

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I’ve had 18 surgeries in the past five years, including one six weeks ago. At no point have any of my physicians communicated with one another. It’s just not done. They operate independently. And they rarely actually care about you. It’s best to expect that, to help you feel less discouraged when inter-doctor communication doesn’t happen.

Even I’m seeing two practitioners in the same office (LCSW and psychiatrist), who share a wall, THEY are never willing to sit in the same room at the same time with me.

 

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I think that is most unfortunate @snow and I don't see why, in the overall scheme of things, it has to be that way. There is always the age-old excuse each doctor is just too busy doing his own thing to read notes and see what the other doctor says about you. They are (supposedly) working in a team and that is something that should benefit the patient. Two heads are better than one, y'know. After all you are paying for their services (or your insurance is and it's still your money) and you would get the biggest bang for your buck if those two can sit in the same room and advise you. It would be so much more efficient. Well that's living in an ideal world of course.
And @ltapilot, I think at this point I would consider contacting a "disinterested" surgeon for another opinion. That is one who hasn't weighed in on your case and can review it on a strictly consultation basis. I'm thinking of a surgeon at a medical school who is a professor of the type of surgery and treatment you're contemplating. That may be a possibility to consider to see if it can be done.

 

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I think doctors may even be prohibited by their insurance companies from communicating with one another. I’m sure there’s some liability issues somehow that an attorney could dig up. It’s sad.