help!!

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Zizzle
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Post by Zizzle »

Regarding Accutane, Roche, the original manufacturer, took it off the market in 2009. They had already settled many lawsuits and have another 6,000 lawsuits :shock: still pending related to IBDs. Unfortunately, generic makers are still selling Isotretinoin, and people can even order from overseas without a prescription. Generic companies are a tougher target for personal injury lawsuits, so the damage to people's health continues unabated. :sad:
Belle
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Post by Belle »

how do you know if you have endomitriosis and what do you do about it. i had gone to a Reproductive endocronologist after my last miscarriage and asked him about it. he had done a lot of tests but didn't think anything indicated that. can there be something he was missing? i would not want to have a hysterectomy as i hope that i can try and have more children when i get well. god willing
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Martha
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Post by Martha »

Dear Belle,

I don't have any advice, but just wanted to tell you that I'm so sorry you've been having such a hard time. I hope that things will turn around for you soon, and that you can get the pain under control. Well, hopefully, all gone.

Love,
Martha
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Joefnh
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Post by Joefnh »

Belle to followup my early post, at this point given the symptoms minimal response to basic meds and the pain levels coupled with the Accutane usage, I would certainly try to get into one of the larger groups like Mount Sinai

Phone number 212-241-0150

http://www.mssm.edu/departments-and-ins ... enterology

While I am certainly no doctor, I would consider myself a well informed patient. I'm not sure if you have had any of these test done and if you have not I would be suspicious at the thoroughness of your doctor

-The first one is a simple blood test which is covered by pretty much all insurances, it's called the "IBD sgi Diagnostic Panel" from Prometheus labs

http://www.prometheuspatients.com/Produ ... p#Serology

While not perfect it does have a fairly high accuracy rate of detecting IBDs like Crohns and several other IBDs.

-The next test would be barium swallow with a small bowel follow through. This is a test that after you swallow a drink that helps highlight any abnormalities in your small intestine and can be seen on a simple X-ray. This test generally will only see significant changes in the bowels like a constriction or fistula that are common in Crohns disease.

-The really cool one (as I am a techy nerd type) is the pill camera that is like a big vitamin pill that you easily swallow and a belt you wear for about 8 hours records the images the pill camera sends out. This generally is more usefull than the small bowel follow through as it gives thousands of images in a movie like format for the doctor to look at and any even mild to moderate inflammation or sores in the small bowel can easily be seen. This is necessary as there is no way for an endoscope to work its way through all 25+ feet of the small bowel.

-Have you had an upper endoscopy often called and EGD? This is like a colonoscopy except the tube, while you are asleep, goes down the throat to be able to see your stomach, duodenum and sometimes the first part of the jejunum, which is the first main part of the small intestine. More importantly the doctor can take small biopsies which are the gold standard in diagnosing these conditions.

These 4 tests are very common when the doctor suspects Crohns or other IBDs. Overall they are pretty easy, easier than the colonoscopy. Why this is important is that about 50% of the time IBDs present in the small intestine, which the colonoscopy cannot reach or diagnose.

Belle I hope these symptoms settle down soon and that you and your doctor can figure this out soon. While many conditions are painful and affect our lives greatly, conditions like Crohns also can cause permanent damage, which is why dealing with it earlier rather than later is important.

In my case I went for many years without a diagnosis after the symptoms first presented due to a doctor that did not listen. This resulted in me having to have surgery to have a segment of my small inrestine removed as it was too damaged to heal. The good news is I felt a lot better afterwards. Your fairly early in this and I doubt your at the point of damage like I was, I'm just trying to give you the information I wish I had so you can make the right decisions.

I know this is a lot of information, the main goal is I believe to get to a better group of doctors. Certainly as mentioned keep up with the diet that has been mentioned here as I am sure that the diet is at times more important than meds, they go hand in hand in helping you maintain your health; it's not one or the other, it's both.

As far as endometriosis, I would imagine talking with your gynecologist would be the best bet.

Take care Belle, I hope you can get into a good group of doctors, it is quite helpful and that you are feeling better soon :grin:
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Post by Leah »

Oh Belle, although I have no great suggestions, I can tell you that many people here have and continue to get better ( me being one of them). There are some great suggestions here and a very bland diet sounds about right. My sympathy goes out to you , but please try to get to the bottom of this. There has to be a solution for you. There just has to.

Leah
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Post by Belle »

thanks for your kind words.
Joe, I did have all those tests done and they did not find anything more. My last colonscopy even showed no more inflamation on the biopsies so i don't know why i am having so much pain. the dr. says the intestines are sensitive and that just takes time to heal. I hope he's right. I am not eating much b/c there are basically no safe foods left. i was with a practice with mount sanai and now i switched to a diff practice that is also through mount sanai. i just started with this one so i hope some good will come of it soon. i am on prednisone and belladonna. i wish i did not have to be on anything.
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Joefnh
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Post by Joefnh »

Hi Bella, that's great you have had the tests and are with a group associated with Mount Sinai. The meds you are on will hopefully help soon The prednisone is a strong anti-inflammatory that should help within a few weeks, hopefully sooner. What dose of prednisone are you on? The belladonna should help with the cramping and pain.

You know I asked my doctor recently about some issues I dealt with after some recent reconstructive surgery and he said there is just one more medicine you need to feel better....Tincture of Time...he was right, sometimes time and patience is just what's needed.

I hope you feel better soon and please keep us updated. :grin:

Take care
Joe
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Gabes-Apg
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Post by Gabes-Apg »

Belle

once i elminated all my major food triggers, it took me about 3 months of a low inflammation, leaky gut healing eating plan to attain the healing level that i no longer had the sharp cramping pains and fatigue.

in addition during this time i was making sure i got enough rest, i did yoga and relaxation exercises, had acupuncture treatments to help reduce the inflammation.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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Deb
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Post by Deb »

Belle, my gynecologist could feel the endometriosis during an exam. Perhaps it was my painful reaction that let them know. I was not planning to have any more kids and had developed a large mass, which is why I had the hysterectomy. There were other hormonal options if I still wanted to try to get pregnant. It was probably the worst pain I've ever had (though a torn ACL was pretty bad).
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Post by brandy »

Hi Belle,

I was wondering how you are doing so here you are. The pain that you are describing deserves follow up. It is way beyond normal MC pain. Not sure by whom as it sounds like you have been thru a lot of medical professionals. Perhaps circle back to the gynecologists to check on women's health issues. Get a 2nd opinion from the gynecologists if you have to then you may have to circle back to the GI docs. I know it is frustrating. Best wishes, Brandy
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Post by Belle »

now they are sending me for a contrast Cat scan to see if it is endomitriosis or still chron's even though i did this test once but it was over a year ago and then they did not find anything
Belle
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Ingrid
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Post by Ingrid »

Which blood test is for Chron? I took Accuatne which triggered my MC but as I do not get better I want to
Rule out Chrons
Ingrid
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carolm
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Post by carolm »

Hi Ingrid, I dont have personal experience with how Crohns is diagnosed but I do have a family member with Crohns and I know what she’s been through. Here’s a link to what the Mayo Clinic says goes into diagnosing Crohns- there is no single blood test but a combination of tests.
https://www.mayoclinic.org/diseases-con ... c-20353309

Best Wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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