Steroids, Imuran, preteen colon cancer

Factual Questions
1

Some dear friends of mine have a sick child. No, I’m not asking for money. I just want to understand what’s going on. As my medical background is entirely unnoteworthy and unoticeable, this is just a lot of info for me to digest at once. So useful comments would be appreciated.

For a quick run down, he’s 7 or 8 yrs old and:

"So we had to return to the full doses [of steroids]. Bah! Being on high doses this long has made him a bit wonky. He’s also gained about 18 lbs. in about six weeks. Yikes! The more and more we do the steroid dance… The more and more we hate it, realizing that he is “steroid dependent.”

The decision: Steroids no more!

How can we do this? Well, we’ve not agreed to surgery!

But we are at wit’s end and looking into immuno modulators/suppressors (?).

We will begin by sending [his] blood work to a lab in California. Prometheus Labs ( http://www.prometheus-labs.com/index.asp ) will check to see if [he] will have any possible negative effects to Imuran. After we receive the “go” from the labs, we will begin the (hopefully) final weaning off of the steroids and the beginning of the immuno suppressor, Imuran.

We’ve dragged our feet about Imuran for some time now… Mostly because the side effects are a bit on the scary side. They include: Thrombocytopenia, Leukopenia, Megaloblastic anemia, Pancreatitis, Hepatitis. Because of these possibilities, we will have to have [his] blood levels checked weekly for a while, then every two weeks, then once a month… and eventually about every three months to make sure that he’s getting enough of the meds to help him, but not enough that it becomes toxic to his body.

For more information on Imuran… Check out:
http://www.docderm.com/patient_information/cytotoxic_mediacations.htm
http://www.transweb.org/reference/articles/drugs/imuranindex.html

This is all very new to us… We’ve tried diet changes. We’ve tried several types of anti-inflammatory meds for the gut (Pentasa, Asacol, & Colazal). We’ve wondered about nicotine therapy or porcine whip worm therapy (would the cure be worse than the disease?!). Now we try the Imuran.

We do know that if we are unable to get [him] into remission and keep him there, his chances for developing colon cancer as a pre-teen are significant (around 80%). Of course, the cure for that is the same as the “cure” for Ulcerative Colitis: removal of the colon."

What’s so bad about steroids? Liver damage?
What the hell is porcine whip worm therapy?
How do people get by w/o a colon?

Is there any other type of treatment that wouldn’t be as risky?

2

First, the usual disclaimer - I am not a doctor.

Second - you didn’t really specify what’s wrong with this kid. I’m assuming ulcerative collitis or something similar, but being more specific would have been helpful.

Anyhow - about steroids. There are actually many varieties of steroid, but again, you weren’t specific on which ones the kid is taking (perhaps you don’t know yourself, which is understandable, as you’re not an immediate family member). Again, assuming we’re talking about those used for inflammatory reactions, long term effects can include weight gain; disruption of normal hormone balances including both the stress hormones secreted by the adrenal glands as well as sex hormones; stunted growth in children; formation of cataracts; early-onset osteoporosis; suspectibility to infeciton; and probably other side effects I can’t recall off the top of my head right now. So yeah, long-term use is a serious issue, particularly in young children. Mind you, that doesn’t mean EVERY child who ever took a dose of steroids is doomed - I have a niece that required periodic steroid treatments from infancy onwards. At 5’11" I’d hesistate to call her growth “stunted”, nor does she show any other signs of long term effects but then, she also had a very different medical condition than the young boy in the OP. And yes, steroids can potentially cause liver problems, or damage the pancreas and lead to diabetes, and so on, but it’s less commonly seen with therapeutic use than with steroid abuse.

Generally, any immune-suppressing or immune-modulating therapy will increase the risk of cancer to some degree. You really have to look at the risk vs. benefit in each case. I mean, early-onset ulcerative collitis can lead to malnutrition which can also stunt growth, lead to weak bones, lower resistance to infection, and so forth.

I’m not terribly famillar with “porcine whip worm therapy”, but if I recall correctly, it was the use of parasitic intestinal worms to moderate extreme immune/inflammation reactions. Basically, you’re talking about delibrately giving the kid worms. This is not as crazy as it sounds. For one thing, most parasitic worms do have means to turn down the body’s immune reaction so they can survive in the body. I must caution, however, that this would be an extremely experimental sort of thing. There’s some logic to it, yes, but it’s not been thoroughly tested and parasitic worms can cause other potential problems. It seems to have helped a very few people who have participated in a very few small studies, but the sample size is quite limited.

People can exist just fine without a colon. Basically, an artificial opening is made in the side of the belly and the end of the small intesine is routed through it. A plastic bag is then affixed, to collect waste, and is replaced as needed. This waste is much more liquid that what colon-owners are accustomed to, and there are some hygiene and care issues that need to be learned, but once the adjustment is made the patient may well enjoy much improved health and quality of life. Tens of thousands of people are walking around without colons every day, and even if you’ve met one or a dozen you likely would never know unless they told you. I believe there was even a professional football player who had to have this operation performed and was able to return to the NFL after sufficient recovery. When necessary, colon removal can be less traumatic than continuing a futile struggle with a malfunctioning body part. Certainly not to be done lightly, but it needn’t get in the way of a full life.

As for other treatments - if this child hasn’t been checked for gluten intolerance (a.k.a. “celiac sprue”) he should be. That should be part of a diagnostic workup but sometimes it’s not. It can cause all sorts of nasty colon/digestive problems of great severity, but if that IS the problem then the patient need only avoid all gluten to heal up and recover health - not that avoiding gluten entirely is easy, but it’s the only alternative that springs to mind right now.

Anyhow, don’t be surprised if one of our real medical types wanders along later. As always, doublecheck everything you read on the internet.

And good luck to everyone involved.

3

Don’t worry about th ianad disclaimer. No one’s gonna make treatment decisions based on the info prvided. This all just for my edification.

No I don’t know exactly. Something with his gut.

In all my ignorance, I’m still certain that his has been done. I remember hearing about this and other types of dietary issues that have been examined.

4

I’m not sure how much more help I can be (other than this one bump to put it back on page one) unless you have more questions?

I’m sure there’s at least a few Dopers who have had this sort of problem/treatment/surgery or something related. It would be nice if they would chime in.

I gather the boy’s parents and doctors have checked into the alternatives pretty thoroughly. I’m sure they’ve been through a lot and have had to make some very difficult decisions.

5

A couchside consult with Pediatricianbrossa, who is not a peds gastroenterologist, not a pediatrician in your state, not your pediatrician, etc., etc., suggests that the 80% chance of ‘preteen’ colon CA in a case of uncontrolled ulcerative colitis seems high. More like an 80% lifetime risk.

Surgeonbrossa (not a surgeon in your state, not your surgeon, this is not medical advice, etc.) would also like to point out a few things. Colectomy removes the colon, from the junction with the small intestine to the rectum. Proctocolectomy removes the colon and some/all of the rectum and anal canal. Ulcerative colitis patients can be treated with colectomy and ileostomy (bringing the small intestine through the belly wall, wearing a bag to collect stool) but the remaining tissue of the rectum can still become inflamed and/or cancerous. Usually, if surgery is required, a total proctocolectomy is done to remove all potentially inflamed GI tract lining. This can be combined with an ileostomy OR an ileal pouch restoration, where a loop of small bowel is replumbed to form a pouch, which is then pulled down into the pelvis and through the anal sphincters and sewn to the anal skin (I skim over some details here). This allows for relative continence with 6-8 bowel movements per day but requires more ‘rehab’ and is more prone to later complications. Although surgery will remove the risk of colon cancer, the patient can develop additional GI problems like sclerosing cholangitis later on in life, which can lead to liver failure.

If this is a case of Crohn’s disease, which can involve any part of the GI tract from the mouth to the anus, all bets are off, since the disease can flare up in a new area after surgery to remove an inflamed area. The surgical options in Crohn’s are all targeted at using surgery as a last resort and minimizing the amount of bowel removed in case of future flareups. The drugs used in Crohn’s and UC can overlap.

Lastly: it is far, far, far better to have your colon removed BEFORE you develop colon cancer. Surgery is not a 100% cure for colon cancer.

6

thanks for the info.

This info is entirely for my own edification. There will be absolutely no medical action taken based on this info. My friends have access to a small team of highly qualified experts who are very familiar with the case.

I just didn’t realize how serious things are with the little feller. I knew he was somewhat sickly, but the extent of the issues weren’t apparent to me.

I do have an outside hope that someone here will suggest some therapy that they haven’t thought of yet. Then the parents can discuss it w/ the Drs. There are definitely several doctors working with them. Matter of fact she opened her letter bragging about how good she thinks one in particular is. He is a pediatric GI specialist.

I have no doubts or concerns about the qulity of care that they are getting for their son. I just really am trying to understand what’s going on w/o having to make them go through all the details for me.

Anyway thank you both very much.

7

IANAD, and all the other disclaimers applicable (although it sounds like you’re using this information in a very legitimate way).

I could provide a bit of my experience with prednisone, a corticosteroid. Not only does it make you hungry and thirsty and all the stuff Broomstick mentioned above, but it also caused insomnia, water retention (and hence painful swelling), an extremely round face, lots of acne, and, at high enough doses, made me paranoid and neurotic. And if the drug isn’t really working for the person, that’s a lot of really awful stuff to have to deal with for no observable benefit. I can believe that everyone involved would want to change the situation.

I’ve also been on Imuran, and it caused moderate leukopenia for me, so I’m off it now and just hoping that remission will continue on its own for a while.

libwen, Crohn’s disease, autoimmune hepatitis and primary sclerosing cholangitis person (diagnosed July 03)

8

libwen good wishes for your ongoing remession.

PatriotX I’ve met a fair few people with UC and Crohn’s.
Some with ileostomies, some with colostomies, some with J pouches (which brossa mentioned), some taking their meds and still being sick, some getting by on just medication, some totally well.

As far as the ileostomy goes, some people never get used to the idea, while some people find that it actually improves their quality of life (for people with UC it can mean fewer drugs to deal with, and not having to run to the bathroom 20 times a day).

If their son is that sick on the medication and with his UC, perhaps his quality of life might be improved by surgery? I’m just saying, that although it sounds fairly horrendous, people with ileostomies and J pouches don’t necessarily have a terrible quality of life.

Perhaps the parents could ask to get in contact with a support group for UC, and try to talk to some people who have had the surgery, perhaps get some information from people who have been in the same boat?
(As far as I’m concerned, nothing which involves porcine intestinal parasites can be a good thing.)

9

Thank you, irishgirl. This may be slightly off-topic, but does anyone know if there has been any research to show that Remicade may be useful for people with UC? I was thinking that might be something this boy and his parents might want to pursue if they really feel uncomfortable with Imuran treatment (or if it doesn’t work out well). But I don’t know if it’s been okayed for use with UC.

Back on-topic, I do think that surgery can help UC patients immensely with the quality of their life, and that it is certainly something that should be considered.

Best of luck to the family, PatriotX.

10

Just a word about all those disclaimers… they’re not just for the OP. They’re also for anyone who might open this thread up some time later during a search, for example. It’s also one way for us regulars to comply with Straight Dope rules about medical discussions, where we have to make it very clear that we aren’t anywhere near pretending to be medical personnel when we aren’t, or that we’re advising you do anything when we aren’t, and so forth. Not because there’s a problem right now, but because there have been some problems in the past and nobody wants a repeat. So sometimes we over do it just a bit. :slight_smile:

11

Yeah, he’s a pretty sick kid.

The whole Crohn’s/ulcerative colitis/ileitis spectrum of GI illnesses is pretty well grasped by the mainstream medical community–although they don’t really know what causes it, or how to fix it, exactly, still there isn’t much out there by way of new treatments or “we used to think, but now we know…” new research that you can Google up and take to the doctor and say, “Hey, what about this?” and have him be amazed and say, “Well, yes, we could try that…”

The porcine whipworm therapy is about as “cutting edge” as you’re gonna get, and the fact that Mom already mentioned it says to me that she and their medical team are already on top of things.

My mother sends me regular bulletins on SOFTA Crohn’s research, is how I know.
Ulcerative colitis since 1976, Crohn’s since 1985.

12

Thanks for your comments. I appreciate them. I’m not sure why this has all of a sudden hit me like this. I guess it’s just the fact that I didn’t ralize for so long.

I’m encouraged to hear about other people who live well with similar problems.

His parents are very on the ball type of people. I have great confidence in their management of his affairs. I’m just a little shocked about what I didn’t realize.

Where’re some of these support groups?

I’ll ask the 'rents about Remicade.

13

I can point you in the direction of a couple of email lists for parents of kids with bowel surgery if you contact me by email. Caveat though – most of the kids on these lists are very very sick with ongoing issues such as Hirschsprungs and not the kind of Hirschsprungs which was remediated by a pullthrough.

My kid had a MACE earlier this month (Malone Antegrade Continence Enema) and we are over the moon with the outcomes. The backup plan was a Chait or worst case scenario a colostomy bag. I wish we’d gone to surgery earlier than we did. It’s far preferable to living with unpredictable bowel movements and pain.

Best of luck to the little guy.