To colonoscopy or not?

Life with Primary Sclerosing Cholangitis
1

Hi all, I’ve been off and on here and still have no complete diagnosis.
My enzymes are back to normal again (have fluctuated greatly since my first blood panel in 2011)
I’m thrilled they are normal but in the past few months I have had a lot of issues with going to the bathroom. Seems it has become more urgent and I have more number 2’s than usual. Not always diarrhea though.
Could be stress related but my GI immediately wanted to do a colonoscopy. I’m only 26 years old and my husband is furious and doesn’t want me to do it. A part of me thinks maybe I’m just stressed but another part is kind of worried it could be UC.
I have a stricture in one of my upper bile ducts but we were hoping it was solved when another bile duct that was closed off got cut open.

Any advice on this would help greatly as it is another $3000 added to the already existing $3400 I have in hospital bills. I just don’t want to do something that might not be necessary.
Thank you,
Emily

2

Knowing what I know now.
WHAT-IF you have UC? Big deal. Deal with the issue as if you have it. Why take the test. Save your money.
Diet is the therapy that works.
Look up GI diet and stick to it.
Mona

3

Emily, I think it is better to know what you're dealing with than to not know. If it is UC, then there are several treatment regimens that the doc can recommend, and your docs need to know they might be dealing with both psc and uc.

If it is not UC and is something else, then plan B. If nothing is diagnosed, then plan C,-diet, de-stress.......may help.

Jeff

4

Thank you all for taking the time to respond. I think it is great advice to get a second opinion and that is what I'll do. It's daunting having years of tests and being poked and prodded with no answers. I'm not afraid to get the colonoscopy, I just want to feel at peace with the decision before I make it. I just think "Now I have to send all of my existing paperwork to someone else and start the story all over again!" As I'm sure most of you COMPLETELY understand. (This is my second specialist and probably 4th or 5th procedure with no answers still)

It has been a long process and truthfully I appreciate this community as my husband is not understanding about this at all.

How does one go about getting a second opinion? Do you just ask for recommendations around town? I'm not from a big city!

5

Not sure what good a second opinion will do, other than cost you more money. Any gi worth his/her salt is going to recommend a colonoscopy. Get the colonoscopy. I’m more concerned with your comment that your spouse was “furious.”

6

Emily--

It is tough having to factor in $ into the question, when there's enough for you to deal with just on the medical side. I hope that your husband comes around. Sometimes, with vague symptoms like come with PSC, it is hard for those who love us to really grasp that we're not well, doing the best we can. And add on top of that the money stress, and again, it can be really tough.

People have weighed in on whether or not UC is a big deal... I thought I'd weigh in with my experience. I was diagnosed with UC when I was 9, had it for 45 years, had my colon out last year when it showed signs of dysplasia. In the time between I had about 30-35 colonoscopies (The early ones, they didn't even knock me out--that was not fun). There was a period when I got a big resentment and refused to get them, but most of the time I got them regularly.

It is my understanding that a person's increased risk for cancer increases the longer you have UC. It is a simple matter that chronically inflamed tissue has increased risked for cancer. And then PSC along with UC increases your risk further.

When I had minimal UC symptoms, the Drs wanted to monitor me every two years. When I was doing less well, every year. And when I had the PSC diagnosis, again every year, even though I had minimal UC symptoms.

My un-expert opinion is that at this point for you, with just new UC symptoms, the main reason for getting scoped would be to help diagnose you. They look, they take biopsies, and they can tell a lot that way that they can't tell any other way.

A second opinion _might_ help you decide. Different doctors have different approaches, and you might get different information -- something the new Dr thinks to mention that the first one didn't, or whatever. But, you'll still have to make a decision, and it will still be entirely up to you.

--Bob

7

Hi Emily,

I understand the need to factor in costs especially at your age. What about asking your doctor if waiting until the new year is okay? That way you could plan ahead for the cost. If it continues to get worse or if you decide you want to proceed, you can always schedule early. In the meantime, look at your diet and stress levels and see if you can't make positive changes for your overall health.

Crewmom

8

Oh, and I was going to add, the standard western medicine diet for colitis didn't work for me--bland, lots of starch, low fiber foods.

I went to a nutritionist and did a careful elimination process. What I discovered for me is that my symptoms almost completely went away when I avoid most starches and sugars. It turned out that my food sensitivities follow the Specific Carbohydrate Diet pretty closely, with some exceptions. After I went through the elimination process she said that many but not all of her patients with colitis showed the same pattern as me.

I also found with the same experimentation that for me there were other things which caused me diarrhea-- tomatoes, eggplant, caffeine, etc. that the SCD doesn't list as being off limits. The nice thing about the SCD is there's nothing you have to buy to follow it. There is an online community, there's a free website which lists legal and illegal foods, there's a bunch of recipes online, etc. It is pretty restrictive, but I definitely found it worth it to follow.

9

Thank you again everyone, all of your well thought out advice has put me at ease!

My husband calmed down after talking to the nurse and has realized that sometimes health is more important than money. We aren't bankrupt by any means, we are just trying to stay out of debt! Good news is, I spoke with the hospital and they were able to get the bill down to only $1,250.00 which is incredible!

After a lot of thought, I've decided to go through with it. The procedure will be July 2nd, so I will follow up and let you all know how things are going.

Bob, thank you for all of your input about UC. It is a strange disease to navigate and understand from what I gather! Diet is important of course.

My 40 year old brother just had 1/6th of his liver removed because he had a cyst that was creating stones and they were getting caught in his ducts. His GI mentioned that he has abnormally small ducts and we have both had our gall bladders out at young ages etc. With that information as well my GI is getting ready to find a diagnosis if there is one for me.

PSC isn't a one procedure diagnosis as I'm discovering and who knows what the future holds, but again THANK YOU, and I will keep you updated as things go forward.

10

Emily -

I am coming in on this a little bit late, but for what it is worth, I think you are making the right decision. Your health is worth more than money. For what this is worth as well, I disagree that diet is the "cure-all". While I agree it is vastly important, not everyone's body is the same. A diet that works for one poster, for example, may not work for you. A clinical trial that works for someone might not work for you. A medication that works for someone might not work for you. What's important is that you can share your ideas, thoughts, and concerns and make an educated decision that works for - you guessed it - you. Regardless of the decision you make I am hopeful that the members of this forum will be supportive and non-judgmental, and I really do wish you the best of luck.

As a PS - congrats on getting those enzyme numbers and bills down! Double dose of atta-girl! :)

Stephen said:

Hi Emily,

I think you have made the right decision.

I am glad you felt comfortable to talk to us. This is why we exist, to offer help to each other.

As for getting a second opinion you should likely go to your Family Doctor, tell him what you are doing and why and ask him to refer you to a new good GI.

Wish you the best of luck. Please let us know how things go.

Thanks,

Stephen

Emily said:

Thank you all for taking the time to respond. I think it is great advice to get a second opinion and that is what I'll do. It's daunting having years of tests and being poked and prodded with no answers. I'm not afraid to get the colonoscopy, I just want to feel at peace with the decision before I make it. I just think "Now I have to send all of my existing paperwork to someone else and start the story all over again!" As I'm sure most of you COMPLETELY understand. (This is my second specialist and probably 4th or 5th procedure with no answers still)

It has been a long process and truthfully I appreciate this community as my husband is not understanding about this at all.

How does one go about getting a second opinion? Do you just ask for recommendations around town? I'm not from a big city!

11

Hello everyone!

I had my colonoscopy on July 2, and all went well. I got my report over the phone yesterday and the colonoscopy and the biopsies were both negative! I am happy about that, trust me.

My follow up appointment is this Friday the 10th and I wanted to ask you guys some questions.

I have been getting tested since 2011 with NO results. (I started with a GI in one city, and then moved so this has been with 2 GI's, 1 hepatologist, and one oncologist.) I have had an ultrasound, a liver biopsy, an ERCP, MRCP, and colonoscopy. I also had Cholestasis of pregnancy which is a total and complete terror. (Itching, not sleeping, etc.) I also saw a blood doctor because at one point my iron was high and they thought I might be a candidate for hemochromatosis which I have the gene for as well. Anyway, I've been put through the ringer. You might be thinking "well you have nothing then!"

My MRCP showed a stricture high up in my bile ducts in-between two ducts coming together. Right in the middle of the "Y" for you visual folks.

When I had my ERCP at Baylor in Dallas the Dr. (hepatologist) cut a DIFFERENT bile duct wide open that was completely closed off. It was another "freak" situation that only happens to a small percentage of people and usually will never happen again in another life time. It was not because of a stricture. That Dr. said that was the cause of my being sick and that everything would be ok after the bile was able to get through that area. My liver counts have gone down SIGNIFICANTLY since this duct being opened. BUT-- My GI doctor said, wait, what about the stricture way up high that we found initially? (He took me off of my birth control with regular blood tests since then until my stomach flared up.)

So here I am still thinking about that stubborn stricture all the way up high in my bile ducts, and the fact that I don't have UC seems promising towards me not having PSC,

But how can I know for sure? (Plus, my stomach is still completely jacked up but I guess that could be a thousand things)

Here is my list of questions for my Dr. Please chime in with anything you think I should be asking. Four years of being poked and prodded with no definitive issue. (Maybe this is a great thing, but it's also frustrating)

1. Is there still a possibility of PSC?

2. If so, how can I know once and for all?

3. Is it best just to wait even though I would prefer to know now?

4. Could my blood be good for years and then flare up?

5. Can the strictures go away, OR could the stricture I had in the upper hepatic duct have been cured when the other duct was cut during my ERCP?

6. How can I have full peace of mind?

12

I too had my gall bladder removed which has caused more issues for me than my PSC, many of which seem to mimic UC. This might be another avenue of investigation for you.

Hope you feel better.