Confused

[tracycat79]

Hey, I just found this forum and I am so glad. I felt like I was alone in dealing with the issues I have been having these past few weeks. I will try to make this long story short. When I was first diagnosed with Crohns it took like six months of tests to finally get a dx!. I had severe lower right quadrant pain, diarrhea, nausea, little or no appetite, and lost 20-25 pounds within a few months. I started pred, but it did not help, and was then put on Remicade every six weeks or eight?Can't remember exactly. I went into remission and stopped seeing a doc. For the next five years I think I stayed in remission, except I still continued to have stomach issues. I am not sure if they were mild flares in between bc I just got use to the constant stomach discomfort. I also continued to have joint pain in my knee, lowered back, a d wrist. Is that possible if you are in remission? Ok, so here is where I am at now. I went to see a new GI doc two weeks ago, but before I went I had to pick up my old records from my previous doc. This was my first time seeing them. The pathology report showed cryptic abscesses in colon and ilieum. It said something about inflammation in the mucosa wall? It said this was consistent with IBD, but did not say crohns. My records seemed a little inconsistent with dx. I don't know. I have been having cramping, gas, constipation, and loose stools. Occasionally diarrhea. I also have consistent joint pain and tylenol does nothing for it. So my doc said my current symptoms sound more like ibs. I guess I agree. But she said that my records don't really show a clear diagnosis of crohns. So what the heck was I treated for back in 2005-late 2006?! She wants to do another colonoscopy in a few weeks. My question is, if I am in remission wont my intestines look normal? Or do they still show signs of the disease when in remission? I would love for her to say I don't have crohns, but then what is causing the joint pain, sores in my mouth, ridged and peeling nails, some with bumps on them, and the low vitamin d? Is it all a coincidence? She did say it is possible to have both ibs and crohns at the same time. Is that true? Does anyone else on here have that dx? I am confused and thought the whole process of finding the dx were over 6 years ago. I am not looking forward to more testing. Maybe I will be able to get a clear answer this time though. Thanks everyone for your posts. It is nice to know that I am not the only one being thrown the ibs dx.

 

[skippy111]

Joint pain in the knee was always a sign that It was time to go back on the prednizone.

Right now the only med for the chron's I am on is the Prednizone as I am post op and just had the colostomy bag /stoma...

I was on the flagyl and cipro but now just the prednizone... in August the GI Dr is going to schedule a colonoscopy to see where we are at...

I am taking psych meds too but they never really bothered my chrons.

 

[Jennifer]

Hi and welcome to the forum!

Unfortunately once you have a diagnosis and treatment and then go into remission that doesn't mean testing is over and you're fine. You still have to get regular testing (colonoscopy every few years and blood work to make sure there's no active inflammation absorption issues etc) done and have checkups every so often with your GI. I would have stuck with that GI since they gave you a treatment that worked. Most docs go by various things that point to Crohn's rather than there be a test that pops up as IBD.

Yes joint pain is possible while you're in remission especially if you have arthritis which Crohn's can cause. An x-ray will show whether or not you have arthritis.

Your report said that you have inflammation in your intestines (mucosa wall). IBS may show low grade inflammation in the ileum and colon but it can't be seen in a biopsy. http://ibs.about.com/od/symptomsofib1/a/inflammation.htm So you may and you may not have IBS, I dunno. If its a lot of inflammation, chances are its not. Yes it is possible to have both and yes there are some people on the forum who have both.

Will your intestines look normal? I doubt it since you are having symptoms off and on. In all honesty you don't really know if you are in remission since you haven't been seeing a GI in a long time. It is possible to have few to no symptoms and still be in a flare (regular tests and blood work will tell you if you're in remission or not). If you are fully in remission then its very possible that everything will look all clear in the tests cause that's what remission is, little to no active disease.

If your new GI claims IBS and you continue to have symptoms, please find another GI. IBS is such a common and often lazy diagnosis by doctors who truly suck at what they do. Not that it isn't real, but its one of those over diagnosed conditions just like depression.

 

[skippy111]

If you were diagnosed with Chrons then that means you have Chrons. Chrons Disease is difficult to diagnose sometimes because it mimics other conditions...

Chrons is a form of IBS but has specific markers.

I agree with Tabby, for a GI to say you have IBS and not chron's would disturb me.

Id go see another GI, Chron's just doesn't go away. The Dr you went to should know this.

The last thing you need is to wind up on the operating table at the hands of someone who is performing a surgery based on the incopetence or lazyness of some quack!

Please keep us posted.

 

[tracycat79]

Thanks everyone for the quick replies and the welcome! I will keep everyone posted. I guess in the meantime I will be smelling like bengay and walking around with therma care patches for the joint pain. Lol...and that only helps a little! I feel for everyone on here, especially the ones with more severe illness.

 

[carrollco]

I have Crohn's arthritis. Last summer I could hardly get in or out of a car much less do anything else. My doc did a vitamin panel and I was extremely low in vitamin D and B12. Once I was started on a high dosages most of my pain cleared up. Not all--but the bone biting pain is gone. Just a thought.