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Need advice on Crohn's diagnosis

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Crohn's Disease
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Posted 9/6/2007 3:04 PM (GMT 0)

Hi!

I have been reading about many of your experiences, and I am impressed by how well you all cope with Crohn’s Disease. I am posting to ask for your suggestions and advice.

My daughter has struggled with intestinal cramps and constipation since 2000. Her PCP treated her for IBS. She managed to control it with diet and sometimes medication (usually hyoscymin ER). (I should add that in 1/2006, she had shingles on her right facial area, and now suffers from post herpetic neuralgia (PHN). She takes gabapentin every day for this along with ibuprofen.) After a severe flare up of the "IBS"  in 2/2007, she saw a gastroenterologist. She had an abdominal/pelvic CT with contrast in late June and a colonoscopy in late July. The CT results were normal. The colonoscopy showed an ulcerated area in the ileum. The doctor made a clinical diagnosis of Crohn’s Disease, and prescribed a course of treatment with Entocort. Because we just were not certain that she really had Crohn’s, she opted to skip the Entocort treatment and wait to discuss it when she saw the doctor in 3 weeks.

At that appointment, she brought up how she has to take ibuprofen very frequently for the PHN and period cramps. Nothing else seems to work. The doctor thought that the ibuprofen could possibly have caused the ulcerated area. He prescribed darvocet for her pain and said she should stop the ibuprofen. The darvocet was not only ineffective, but also it caused her to itch all over her body. She stopped it after two days. She managed to stay off of the ibuprofen for about two weeks, but then broke down and took it for ear pain (PHN.) She sees the doctor in mid-September.

--What other tests could be done to make a more definitive diagnosis of CD?

--What about second opinions? This doctor seems reasonable and open to discussing things, but, as many doctors, he is very ready to prescribe meds.

--Many of her symptoms are like those of IBS. When she said that she has never had trouble with diarrhea, but, instead, tends to be constipated, the doctor said that diarrhea is not always that prevalent a symptom of CD. Have any of you found this to be true?

--Have any of you used diet to control your CD?

--What experiences have you all had with Entocort? We are fearful of our daughter taking a steroid. She is an elementary school teacher and is constantly exposed to all sorts of viruses and bacteria. Also, she is in a high-risk group for osteoporosis and has a family history of high blood pressure. We know if she has CD it may be necessary for her to take steroids, but the side effects are very scary.

Thank you for reading this and for any input.

 Mum46

Posted 9/6/2007 3:14 PM (GMT 0)

Crohn's is a very difficult disease to diagnose, as its symptoms and physical manfestations mimic many other conditions. Her ulderation in the terminal ileum could be a sign fo Crohn's or of ibuprofen irritation. IBS remains a possible diagnosis as well. One test you do not mention is an examination of the small bowel, where many Crohn's patients have their primary disease. The gastroenterologist could schedule a small bowel follow through (X-rays) or the capsule endoscopy procedures, which is the gold standard test for small bowel problems. From your report, he is proceeding as most GIs would, cautiously and with an opne mind. I see no reason to bolt and go doctor shopping.

Entocort is not a high-powered steroid - I believe it is the one that is time-released in the bowel with less systemic reach than prednisone, which is the one to watch out for. I doubt that a course of Entocort would cause major problems.

You really cannot treat Crohn's solely via diet (I know a few folks will bristle at that.) A good analogy would be diabetes: it's important in both diseases to remove certain things from your diet that aggravate symptoms, but diet alone is very unlikely to address the underlying disease process. Diabetics wisely refrain from eating lots of sweets, but they also take their insulin; Crohn's patients wisely refrain from eating pepper and bulky items, but they also take their meds.

Posted 9/6/2007 4:26 PM (GMT 0)
Steroids are used to quickly control a flare.  They aren't meant to be used as a maintenance drug.  If the diagnosis is confirmed, your daughter will probably go on other drugs and taper off the steroid.  I see a Rheumatologist as well as a GI, because I've had problems with joint pain.  That's pretty common with Crohn's.  My Rheumy has me on Actonel to protect my bones while I have to be on Prednisone.  As Mike said, Entocort is less likely to cause problems, but it wouldn't hurt to ask her doctor about osteoporosis drugs, especially since it's in the family.

I understand your concerns about the drugs used to treat Crohn's.  Especially since she works in such a germy environment.  I was just diagnosed this summer, and I've spent a lot of time considering and researching these drugs, too.  Unfortunately, as one of my doctors pointed out, there are no benign treatments for Crohn's.  Every option we have effects the immune system and can have serious side effects.  But not getting the disease under control can lead to serious damage. 

Would it be possible to bring the school nurse in to the classroom for a lesson on hygene?  Without getting into a lot of detail or scaring the kids, she could explain that she is on a medicine that makes it very easy for her to catch colds.  Making hand washing and wiping down desks and door knobs with Clorox wipes a routine part of the school day could help prevent the spread of germs.

I'll admit it.  I really miss Advil.  Tylenol just doesn't cut it for my period cramps.  Darvocet made me sick, and so did Vicodin.  Pain management can be an issue for us.  Some GIs don't want to prescribe pain medication, so she may need to go to a pain clinic to find the right solution for her.  Just be very careful with the ibuprofen.  I believe that all the Advil I was taking, before my diagnosis, contributed to the flare that landed me in the hospital for two weeks this summer.  It stressed an already inflamed system.

The doctor was right- not everyone has problems with diarrhea.  Some folks have problems with constipation.  Part of the reason Crohn's is so hard to diagnose is that it presents so differently in different people.  Some have more problems with their joints than their guts.

Changing doctors can be a hard call.  Does he take the time to answer your questions?  Is he willing to listen to your concerns and adjust treatments accordingly?  Is it difficult to schedule appointments?  Does he return calls?  Sometimes s/he can be a good doctor, but not the right doctor.  Just know that if the diagnosis is confirmed, there will be drugs, so don't base the decision solely on how quickly they whip out the prescription pad.  I had a hard time will all the pills at first, too.  But I'm finally feeling human again, and there's no way I'd give them up now.

Good luck to you and your daughter.  I hope she starts feeling better soon.

Posted 9/6/2007 7:24 PM (GMT 0)
With crohns one can experiance D or C similar to IBS, 2 things rule out IBS, if there is bleeding (other then from a hemheroid) and if there's inflammation sometimes with polyps, those 2 things don't go with IBS.

Crohns can be very sneaky too, hiding in all kinds of nooks and crannies, scopes and tests don't always show EVERYTHING.

:)
Posted 9/6/2007 7:48 PM (GMT 0)
When I was taking Prednisone, I was at school, and my mom is an elementary school teacher as well, and I didn't catch any more colds than normal. I'm also on azathioprine (Imuran), and again, have never noticed that I've caught more colds than normal. I do get the flu vaccine too, which helps.

It was hard for me to give up ibuprofen too; it used to be my primary over the counter pain reliever. Has your daughter mentioned if taking the hyoscamine ER helps her period cramps? I take dicyclomine, a similar drug, and have definitely noticed that it helps out a lot with all kinds of cramping, intestinal and period related.
Posted 9/6/2007 8:40 PM (GMT 0)

Your daughter's GI doctor seems to be thorough and methodical (as do you and your daughter :-) ).

Ulcerations in the terminal ileum are classic signs of Crohn's, but they also could be caused by the ibuprofen, so the GI is wise to be cautious about giving a definitive Crohn's diagnosis.

Were biopsies taken from the terminal ileum during the colonoscopy?  Pathology reports from biopsies may be able to distinguish Crohn's from NSAID-induced ulcerations.

Other than that, the best test remaining to help figure whether it's Crohn's is the Prometheus Labs IBD Serology 7.  This is a blood test that looks at certain antibody levels and predicts with pretty good accuracy (>90%) whether a person has Crohn's.  If this comes back positive, then it, along with her symptoms and the ulcers on the terminal ileum, would be sufficient to diagnose Crohn's.  If it comes back negative, I would think the NSAID (ibuprofen) is the likely culprit, along with IBS.

He could also order a CT enterography, a fairly new CT scan procedure that's similar to the small-bowel follow through but possibly better at revealing thickening or stricturing of the walls of the small intestine.

Posted 9/6/2007 8:50 PM (GMT 0)
Hi, MUM46, Welcome to Healing Well. Please have your daughter stop taking Ibupropen, No Asprin
types meds the are bad for people with Crohn's. Especially if she has Crohn's. I would get a
2nd opioion.
Posted 9/6/2007 8:51 PM (GMT 0)
I should mention the Prometheus Labs IBD Serology 7 test costs about $400-$500 dollars, and not all insurance companies will cover it.  Check with your insurance, or have your doctor's office do so, to see whether it's covered.
Posted 9/6/2007 9:10 PM (GMT 0)
Mum - my first thought when I read your post was "Were biopsies taken of the ulcerated area during the colonoscopy? And if so, what did the pathology report say?" Ulcerations from ibuprophen can resemble Crohn's and even can have SOME similarities under the microscope. However, there are often architechural changes in the mucosa of a person with Crohn's that is not seen in ibuprophen induced ulceration.

Originally there was question whether use of NSAEDs gave me the erosions seen in my terminal iluem. I stayed off NSAIDs for 6 months and had another colonoscpy and biopsies.

I understand the pain of PHN - I have small fiber neuropathy of both feet and lower legs. I take Neurontin [gabapentin] too. Neurontin alone does not alleviate all of the pain and odd nerve sensations I get. Since I can't take ibuprophen or other NSAIDs, I wes prescribed Tramadol to be used with the Neurontin. It works very well in combination. Perhaps her doctor would be willing to try Tramadol to be used for breakthrough pain that the Neurontin is not controlling.

Others have addressed the Entocort issues well. I have been on medications for 3 years that modulate my immune system. I have FEWER viral infections than I did prior to going on the immunosuppressants.

I hope your daughter can get some relief for her PHN without resorting to NSAIDs for if she does have Crohn's it could very likely make her condition worse. If you dig up her pathology reports, I/we would be happy to answer any questions you might have.
Ides
Posted 9/8/2007 4:06 AM (GMT 0)
One more thing to add, many of us were incorrectly diagnosed at first with IBS or UC. Also, I a good dr. who is knowledgable about CD is usually agressive with the meds as CD is agressive and should be dealt with.

Hope your daugther is feelinb better soon.
Posted 9/8/2007 12:37 PM (GMT 0)
I don't have D with my crohns....I lean towards C especially when I don't drink enough water. I am also a teacher who has been on remicade and imuran for almost 3 years. I am a music teacher who goes to 4 different schools, so I am exposed to all those germs x4! I actually am the healthiest person I know. I have not gotten a cold since I started those drugs.

Yes, steroids can be scary, but entecort has the least side effects. She should get a base line dexa scan if she has not had one, that way you can track the bone loss if any. If she isn't on any "bone building" meds, she might want to consider taking something. Even without the steroids, we sometimes don't absorb what we should from our food.

My first dr. was not aggressive with meds, and I kept going back and saying that I am not better I am feeling worse....still nothing. Well, I ended up in the hospital for a week, and when I got out, I was so week, that me and my family had to go live with my parents for about 2 months. Crohns needs to be treated! It never hurts to get a second opinion...
Posted 9/8/2007 5:50 PM (GMT 0)

Thank you all so much for your input. It's exactly what I had hoped for. :-)

Unfortunately, I do not have a copy of the path report from the biopsy on the ulcerated area in the ileum. We thought we had it when we left, but later found that we only had the radiologist's report from the CT scan. I do remember that the doctor said that the path report indicated no conclusive evidence of CD. We will get a copy this week.

The hyoscymin ER does not help with the period cramps. In fact, it aggravates a bladder problem that she has. But it does help the intestinal cramps some, so she continues to use it. She has also used dicyclomine in the past. It made her really spacey, but did help with the cramps. The gabapentin she takes for PHN also has a tendency to make her spacey.

I am encouraged to hear that many of you tolerate the steroids fairly well.

We are really curious about that Prometheus Labs IBD Serology 7 test. All the information from these posts will help tremendously in preparing for the upcoming doctor visit. Thank you!

Mum46

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