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Possible stricture/fistula?

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Crohn's Disease
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Posted 3/30/2011 10:59 PM (GMT 0)
This is a continuation of another thread that I started recently, but the topic has kind of changed a little, so I thought I'd start anew, rather than posting updates with questions. 

Briefly, my Daughter began having LRQ pain with constipation. It was accompanied by alot of burping/belching after eating. 

I got her in to the GI clinic, and she had an ultrasound. It came back with a possible fistula, and the Dr. speculated perhaps more stricture is occuring hence the constipation, but doesn't agree with the Radiologist, that there's a fistula. He feels it's inconclusive.  

He initially suggested further tests, a SBFT or CT scan. They would consult with our regular GI, and call us.

Well today they called, and decided to wait a week and do another ultrasound. The nurse said that because she is transferring to the Adult GI clinic in 3 weeks, they would rather just wait and monitor her, and let the new GI Dr. make any further decisions. 

I was floored by this and really left wondering what to do. The nurse really just wanted to get off the phone at that point, so that was the end of it.

I was looking forward to a SBFT, just for peace of mind alone. Now we're sort of left wondering what's going on inside. 

I'd really appreciate any advise. I know how fast things can change with this disease. Am I overreacting?

Thanks,

Tom.

 

Posted 3/31/2011 12:49 AM (GMT 0)
No, I don't think you are overreacting. It sounds like you and they had agreed on a course of action and then they suddenly pulled the rug out from under you, telling you what they wanted to do and not really bothering to listen to whether you agreed or not.

Often, medical professionals are so rushed that they don't go over all the reasons for their decisions. So I'll take a wild guess - maybe they are thinking that Flagyl might affect the results. For instance, it could make the fistula go away, IF there is one. So it makes sense to finish the Flagyl (was it a ten day course?) and then redo the ultrasound and see whether anything shows up.

Post Edited (njmom) : 3/30/2011 6:52:42 PM (GMT-6)

Posted 3/31/2011 1:03 AM (GMT 0)
njmom,

This is the part i dislike the most in dealing with medical professionals. Your so at their mercy. You can express your fears and concerns, but ultimately they decide the course of action. 

They gave her a 3 week supply of Flagyl. Am I missing something about the ultrasound? They already have one inconclusive ultrasound, why do another one? I feel a more intensive diagnostic test is warranted.

I guess we'll just have to sit and wait.   

Posted 3/31/2011 3:50 AM (GMT 0)
Hmmm...actually, what my daughter and I do is listen to the medical professionals, then make our own decisions.

She has refused to have a colonoscopy done when a GI wanted her to have one, and yet on another occasion has consented to one. The reasons for saying yes or no depend on the context. The decisions are always the patient's, and not the medical professionals. When one GI kept refusing to prescribe LDN, she found an internal medicine doc who would consent to prescribe it. 

Can you call the GI to discuss this? Does she or he return calls the same day or at least within 24 hours? 

How is your daughter doing on the Flagyl?

Posted 4/1/2011 12:50 AM (GMT 0)
I wish I could feel more in control, or could be more demanding. I always feel like you want to stay on their good side.

I don't have the option to call our GI an talk to her directly. The GI nurse is the go between, and all roads go through her. 

As far as the Flagyl goes, she has been on it before, and as I remember it made her extremely tired. I don't think it did anything for her in the past. She's only been taking it for a few days, so it's hard to say right now. They also have her taking Senekot everyday for awhile to soften the constipation. Hopefully, she'll get her second ultrasound done next Tuesday, and combined with recent bloodwork we might get some answers. 

How do you find the LDN? I don't think we can get that prescribed here in Canada.

Posted 4/1/2011 5:17 AM (GMT 0)
My daughter might drop the Entocort, but she will never drop the LDN. The LDN causes her no side effects, and seems to boost her overall health. It also enables her to taper off Entocort and keeps symptoms at bay. She was on LDN along with a modified version of the SCD diet, for a year, and had no symptoms or side effects, and not even a sniffle from a cold. Within 6 weeks of stopping LDN last fall, her Crohn's symptoms came back and she developed a terrible cold, so we know it was definitely working for both the Crohn's and overall health. She could have gone back on the LDN, but we were scared and she didn't want to take any chances, so she went back on Entocort and then re-introduced LDN as she slowly tapered down off Entocort.  We are really grateful for the LDN. We aren't convinced it brought Crohn's to a dead stop, because her CRP was just a tad higher than normal, but it definitely brought it under control. We are hoping either the strict SCD diet and/or Pentasa will prove to be the magic combo. Right now, with the LDN and Entocort, her labs are normal, but of course she can't stay on Entocort - has already pushed her luck with it, by being on it nearly nonstop since 2006. So she will try LDN with strict SCD and/or Pentasa. It might be worthwhile to consider LDN for your daughter. It seems to work well with both Entocort and Pentasa. And is probably fine with Imuran, which is an immunomodulator, because some of the participants in the LDN clinical trial were on immunomodulators. The worst side effect is weird dreams in the initial two week period, but they go away after that for most people. Any doctor, even in Canada, I assume, can prescribe LDN. Guidelines for prescribing, including information about pharamcies in Canada, are in the following link: www.lowdosenaltrexone.org    The info below was from www.ldners.org/resources.htm Clinic Pharmacy Oshawa, Ontario, Canada (905) 576-9090 Smith's Pharmacy, Toronto, Ontario, Canada (800) 361-6624 Canadian Apothecary, London, Ontario, Canada (519) 439-4100 The Medicine Shoppe, Toronto, Ontario (416) 239-3566    
Posted 4/1/2011 9:59 AM (GMT 0)
I haven't done much research on LDN, mainly because I doubted that our GI would even discuss it. I know it's safe and used to alcohol addiction, and have read conflicting reports on effectiveness. I suppose that's true for any drug treatment though. Other than that, I have no idea how it's suppose to work. Does it work on the immune system or the mucosa?

I know one thing for sure, my Daughter could never do the SCD. She's always been a picky eater. I've looked at some of the foods on that and know she couldn't do it for even a day.

Tom.

 

Posted 4/6/2011 5:39 AM (GMT 0)
Some pictures from a clinical trial showed that it can heal the mucosa. It works on the overall immune system, but specifically helps Crohn's. Like any med, it's not a sure thing for everybody, but at least there are no known serious side effects.

Yep, SCD is not easy and I don't know how my daughter did it, especially since she hates SCD-legal foods like nuts and nut flour. She is going to stop it, soon, and try to maintain just the LDN and Pentasa combination.

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