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Hi! New here...

Hi! I've had Crohn's for 20 years and IBS for 6. Up until the past few years I've been able to manage it without interfering too much in my life, but lately I'm having a hard time coping with the symptoms. Sometimes I think I'm crazy because the doctors have no answers or solutions for me. I've tried almost every available drug that I know of with less than satisfactory results. Sometimes I think I'm the only one who knows what this is like, but after reading some of the posts on this site I certainly don't feel alone anymore. Thanks for having me. I look forward to "talking" with some of you more about your experiences and thoughts. - Amy
 

Regular Joe

Senior Member
Hi Amy,

Welcome. I've been diagnosed with both IBS and IBD, so I understand some of what you're going through. I know that Crohn's disease is an autoimmune disorder that creates an inflammatory condition in your gut. I'm being treated and the Crohn's and autoimmune symptoms are pretty well under control.

But the IBS, that's an odd thing. I still get cramping, sometimes extremely painful, sometimes diarrhea, and nothing makes it go away. But it stays localized to my lower bowel, and I don't get fatigued or joint pain or the other Crohn's symptoms. I'm beginning to think IBS has something to do with the nervous system, because my neurologist and GI decided to increase the dose of Lyrica because it's known to calm nerve pain associated with other disorders, like fibromyalga, and it also has some success with IBS. It has helped but it doesn't take away the symptoms completely.

Hang in there, and hopefully you may find a GI doctor who is passionate about Crohn's disease who can help.

Welcome, and we're here for you.
Joseph
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Amy, I'm no authority but I am surprised that you have a separate dx for IBS and that it came 14 yrs after the crohn's dx. Many on here suffer for years with "IBS" and after a great deal of pain and frustration are dxed with crohn's. I doubt you'll find a better ally than the poster just above this. I hope you find the answers you need.
 
Hi Amy, I am new also to this forum and have just posted my story, we all feel alone at times, but signing onto the forum and reading all the posts, its amazing how many sufferers there are out there !!!!!!
 
Hi Amy,

Welcome. I've been diagnosed with both IBS and IBD, so I understand some of what you're going through. I know that Crohn's disease is an autoimmune disorder that creates an inflammatory condition in your gut. I'm being treated and the Crohn's and autoimmune symptoms are pretty well under control.

But the IBS, that's an odd thing. I still get cramping, sometimes extremely painful, sometimes diarrhea, and nothing makes it go away. But it stays localized to my lower bowel, and I don't get fatigued or joint pain or the other Crohn's symptoms. I'm beginning to think IBS has something to do with the nervous system, because my neurologist and GI decided to increase the dose of Lyrica because it's known to calm nerve pain associated with other disorders, like fibromyalga, and it also has some success with IBS. It has helped but it doesn't take away the symptoms completely.

Hang in there, and hopefully you may find a GI doctor who is passionate about Crohn's disease who can help.

Welcome, and we're here for you.
Joseph
Thanks, Joseph. It sounds like you've been through what I'm going through now. My doctor has just prescribed some more tests (CT and small bowel series) and blood work to help determine if it's the IBD or IBS (or both) that are troubling me right now.

That's great that you are able to determine the difference on your own. That would make life a LOT easier if I could. You mentioned you see a neurologist. Is that solely for the bowel problems? And the two doctors work together on your case? I feel like all of the different doctors I've been to do their own thing and don't work together at all. Maybe this is something I should look into more?

Thank you for your reply. I really appreciate knowing I'm not alone in all of this.
 

Crohn's 35

Inactive Account
Hi Amy, welcome!!!! I see you have had lots of support here, and sometimes we all are confused. I just went through a bout of tests in Feb for possible colitis on top of my Crohns, but was sought out to be a gastro bug. He still thinks I have IBS...sometimes I think they tell you that because they arent sure themselves. Glad you found us!
 

Regular Joe

Senior Member
Hi Amy,

Have you ever heard of the term "synchronicity" or "serendipity"?

That's how it all came together for my treatment team.

The story is long.

Long before the GI and the Crohn's diagnosis, I had what I now see as the actual onset more than 7 years ago. I'm sure it was the disease back then because I ordered the old CT reports and the diagnosis. Everything pointed to Crohn's. I had narrowing of the small bowel and thickening of the wall right in the same place where Crohn's was found this year. That diagnosis was a probable partial obstruction of the small bowel of "unkown etiology". I was put on a liquid diet for about 2 weeks. Then to BRAT (Bananas, Rice, Applesauce, Toast).

After that my vomiting, upper GI pain, and diarrhea went away, and I was so frightened to eat anything. That partial obstruction was about the most painful GI experience I ever had, and they were concerned about surgery if the liquid diet didn't help. I'm sure I modified my diet enough so as to conform to IBD diets. I never followed up because the whole thing lasted about 2 months, and it went away after the liquid diet, and I was extremely cautious in eating habits. But that was also when they discovered the mesothelioma, so all attention went from my gut to my lung.

In the middle of this, I kept having horrible migraines, and I popped Advil and Aleve like candy. My employer forced me to use FMLA so my regular doctor started trying to calm the migraines to no avail. He threw his hands up and said "Go to the headache clinic at tne main campus!" My primary care doctor has NEVER given me bad advice or had an incorrect diagnosis. He's cold, clinical, and mean as hell, but he's never been wrong.

Enter the neurolologist. I don't know how I chose this "professor gadget" type of unconventional specialist. I think I just picked his name out of the hat. He's all wide-eyed and bushy tailed, and determined to get me to be able to drink milk and eat chocolate with no migraines. So he listened to my story and said whoa on the NSAID's because they weren't helping me, and he began treating me with triptans (I'm sure that's what brought on Crohn's was my extreme overuse and overdosages of NSAID's). The neurologist reviewed my records tapping his fingers. Then he said "Topomax? Did you ever have kidney stones?" Hell yes. Ouch! Thanks for the reminder! "OK, we'll try Lyrica".

He went on to tell me the clinical mechanism of Lyrica which is - relate this to IBS and Crohn's - an "anti-spasmatic" and "anti-seizure" prescription. This was his own idea and experimentation. He believes migraines are the result of "hyper-active" brain neurons that react wildly to "triggers".

The anti-seizure mechanism of Lyrica calms the hyper-sensitive brain neurons back to a more manageable state. He said to take Lyrica every day, and it should bring the migraines down substantially. Then he prescribed a tapering-up schedule. This dude is like a walking encyclopedia. But by golly, he was right, the drug worked. He upped my dosage to 300mg in two doses, but insurance would not cover it, and my co-pay was outrageous, so I tapered down to 150mg which kept the migraines at bay.

After I had the lung tumor removed (benign mesothelioma), my blood oxegen levels increased from .94 up to .99 where they are today. Suddenly my migraines REALLY came down from (2) a month to (1) every 2-3 months. The neurologist set my case aside for study. He now theorizes that lower blood oxegen levels caused by lung dysfucnction contribute to increased migraines. He has 400 patients, and he said he's anxiously awaiting for one of them to have surgery for a lung-related problem.

Current. I got the new GI in January. He presumed from last year's colonscopy that I had "Mild Crohn's". He wanted a colonoscopy that he did personally, and pathology he could make sense of. He could not relate "mild Crohn's" to all of the symptoms I had. So we went through a number of IBS therapies, because every time I visited him, my lower bowel was spasming like crazy.

I was having a mini-flareup once, and he knew it. He said "So what if it's Crohn's? Lets say you have mild Crohn's. There's something else going on because your symptoms are too severe for what's showing up [in the first colonoscopy which identified "mild Crohn's" with a question mark] - this was prior to his official diagnosis. He read my case notes - the same ones my neurologist read. The GI eliminated medications that were counter-indicated. Then he blurts out "Lyrica. You can take Lyrica can't you?" I said yes but told him about the co-pay problem then we went on to another generic drug.

Finally the GI does the colonoscopy, and confirms what we already knew, he finds a precancerous nodule in the large bowel not (directly) related to the small bowel CD. Again, because my condition had got worse since the last visit, he insisted that something else was wrong. He prescribed the Entocort and said that should take care of all my Crohn's disease symptoms - whatever symptoms were left are not attributable to Crohn's disease.

5 days later I go to the neurologist. I tell him about my CD diagnosis. I'm whining about anxiety. He goes through the record-review-finger-tapping routine and suggests "Lyrica". We can increase my dose of Lyrica to 300mg, and take 150mg twice a day during the day so I can benefit from an "anti-anxiety side effect" from Lyrica.

The GI calls back with the lab pathology the following Monday which confirmed Crohn's and colon dysplasia. I'm still whining about anxiety, and he's wondering how I should treat the symptoms which haven't improved with the Entocort (after only one week). He says we could go to pred, but I might not like the side effects. I told him the neurologist suggested increasing Lyrica for anxiety, and even he (the GI) suggested Lyrica a couple visits back to ease my colon spasms and cramps.

He does a "hummmn" followed by"OK lets try this. Stay on the Entocort, but increase your dose of Lyrica to 300mg like that neurologist said, and see if that helps." I asked him how shoud I take it, and he said I don't know - take it how the neurologist said to take it. If you need a new prescription, call him and aslk him how to take it.

And that's how it "magically" came about. I upped the Lyrica which took away the anxiety almost immediately. The Entocort began to eliminate the Crohn's symptoms. There was still cramping left, but not as bad as before. So between the neuro and the GI, they devised a pretty darn good therapy plan Crohn's and IBS based on what I already use for migraines plus the Entocort - and it was a series of seemingly unrelated events and ideas.

The cramping and pain level I feel now is manageable, and it's still there, but all the other Crohn's autoimmune symptoms (flank pain, rear back pain from the abdomen, fatigue, joint pain, and even diarrhea has calmed) are pretty much gone. So when the GI said "Whatever symptoms are left are not attributable to Crohn's disease", I believe he's right. My colon apparently still spasms, so I agree with his IBS diagnosis.

Once again, "the river" (in my medical life) flows where it's supposed to, and it doesn't need me pushing it in another direction. The whole situation sort of worked itself out in a pretty novel way - which kinda blows my mind.

I'm left with a few interesting and probing question because of how this played out. I want to stress that both the GI and the neurologist are top-rated within the Cleveland Clinic and nationwide. I trust them and have faith in their work. Here are my questions:

  • Is there a connection between Irritable Bowel Syndrome (IBS) and the central nervous system?
  • If we go about treating IBS strictly from the GI angle, is it possible we're leaving out a vital piece of neurological or other "systemic" information?
  • If there is a neurological connection to IBS, would that explain medical doctor's insistance that IBS is a "non-functional" GI disorder realted to a patient's mental health? If so, it almost seems they MD's are "subliminally" pointing us in the same direction that the "river is flowing": "it's all in your head"
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I doubt you'll find a better ally than the poster just above this. I hope you find the answers you need.[/QUOTE]

See, I told you.
 
Joseph, Wow that is quite a story!

So, are you convinced that the entocort is working on your CD and the "left-over" symptoms are IBS? I ask because I've tried so many different medications - including entocort - that didn't help me. Then again, looking back, I wonder if that was because I was suffering from IBS and not IBD at the time.

You said you can tell the difference between the two. Have you always been able to make that determination or was it something that you had to "learn"? I can't seem to figure my symptoms out. Right now everything just hurts and I'm running to the bathroom as I have in the past with CD.

Would you mind if I mentioned to my doctor your experience with lyrica for IBS? Do you know of anyone else who it has helped?

I also think, without a doubt, that IBS is related to the central nervous system in one way or another. I'm glad that you've got a team of doctors in your court and that you are feeling better. Thanks for sharing your experience with me!
 
Welcome to the Crohn's Forum Amy!!
You will find meet and make many knowledgeable friends here..
who are all willing to help you.

Welcoming Hugs~Nancy :)
 

Astra

Moderator
Big hello Amy
and welcome

Our Joe has said it all, and I'm sure it's helped!
hope you stay around, glad you found us
lotsa luv
Joan xxx
 

Regular Joe

Senior Member
Hi again Amy,

For me it's hard to tell which symptom comes from where. I do know, however, that when something is going on related to Crohn's disease, there is more than one "system" involved. That is the heart of autoimmune disorder: it involves more than one organ, system, physical area, and so on. I get joint pain and fatigue when Crohn's is flaring.

I notice that there are times when I get cramping and diarrhea, but that's all. And the cramps are relieved when I poop. This is a classic IBS symptom. Essentially the only symptom at work is in my large bowel.

I've been doing a little research at the Cleveland Clinic web site, and I've found out some interesting things about IBS. I would in no way "discount" IBS - it's not the Crohn's disease "stepchild". The Cleveland Clinic specifically says that the disorder has a firm diagnosis, not just a "catch-all" place where GI symptoms occur with no cause. Anyone that diagnoses IBS should be using the Rome III guidelines, or he/she is not giving an accurate diagnosis.

There are some very specific differences with IBS. IBS does not wake you up with cramping and diarrhea - Crohn's does, for example. the Clinic has a list of similar "Alerts" or "Alarms" which indicate GI symptoms that need further diagnosis and pretty much rule out IBS.

I found studies that do in fact link IBS with frontal lobe activity, which differentiates IBS patients from others. This is not Crohn's disease I'm talking about. Let me stress this. There are neurological (not "psycohological") events that happen differently in the "hard wiring" of a man or woman diagniosed with IBS.

IBS is a organic condition with no known cure. It stands on its own - it's not just a "black box" for doctors to lump togtether GI symptoms with no known cause. There are studies that associate IBS with patients who also develop Fibromyalga and other chronic pain disorders - these are the studies that identify the IBS neurological connection.

Now here is a clincher, and it's not good news for anyone who has been diagnosed with IBS, and not IBD. Although the percentages are not exremely high, a study found that people with IBS are more likely than any other group of people to develop Celiacs disease. The same study also shows patients with IBS are also at a slightly higher risk of developing IBD, as some of us have. But the prominant (trend) indicator is for Celiacs.There are some GI's and medical researchers that are proposing that IBS may be a "precursor" or an early stage of "onset" of Celiacs disease.

I'm throwing this information out here so that those of us who have an IBS diagnosis can at least be assured this is not a "psychosomatic" or "psychiatric" phenomenon. IBS is a specific organic clinical condition that effects 18% of the population (according to the Cleveland Clinic). So if any of us are being told this is "psychiatric" or "all in your head", get the facts and confront the physician because he/she is DEAD WRONG.

I just stumbled into this information because I've seen there is so much "misinformation" circulating about IBS. I'm finding serious and current research that treats IBS with a high degree of understanding and respect as a clinical condition.

I was stunned. Now I'm fascinated.
 
Joseph, thank you again for the helpful information.
I put myself on a gluten-free diet for about 6 months 2 years ago and it really helped me a lot at first. But like so many things I've tried (diets and medications) it didn't last. I was tested for Celiac's at my following colonoscopy and it showed negative so I've been eating gluten ever since.
Now I am wondeing if I take gluten out of my diet during times when I'm not feeling well and unsure of the cause (IBS vs. IBD) might not help ease my pain and diarrhea.

I am also very interested in the Rome III guidelines. I will look into this more. I woke just last night to use the bathroom, so I guess that's something I should mention to my GI when I see him again.

Again, I thank you all so much for the warm welcomes and helpful advice!
 
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