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Crohn's Disease
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Posted 7/17/2015 11:42 AM (GMT 0)
I've popped my head in at chronic pain, RA and depression, so might as well complete my rounds here. I've been dealing with IBS like symptoms for 15 years plus. It got much worse around 5 years ago and I started seeing doctors to figure it out. The first doctor was not overly helpful, didn't diagnose anything and didn't help much. last fall I had some other (possibly related) issues that found me at a rheumatologist. He was the first to suggest I may have CD. My bloodwork showed positive for 2 specific markers that when they both come up positive, it is very specific to CD. I went to a GI and she confirmed that she believed I had CD based on my symptoms (frequency and urgency of BM's) She repeated the lower and upper I had done 5 years ago and both came up negative. She wanted to do the camera, but my insurance was making us jump through hoops. All the while she was throwing expensive pills at me. First Pentasa and then Entecort. I found neither to be helpful and bailed on both quickly because of the cost. I never did get the camera done and I am finished with that doctor. Most recently my rheumatologist has prescribed Humira (waiting for prior authorization currently) I really like this doctor and I am going to get a referral from him for a new GI. I try to watch my diet and I have definitely found several surefire triggers, but I really struggle with the time required to be as focused on my diet as I need to be. My wife and I both have high pressure jobs and we have 4 kids ages 1-6. It has been a few years since I have understood what "spare" time is.

Overall my CD has not been horrible for a while. Identifying my list of "DO NOT EVER EAT" foods has helped with the urgency issues. What I am dealing with now is more urgency in the middle of the night. I was up from 2-3 last night. And I had eaten all things I have eaten before without issue. I am not currently taking any meds or supplements for my CD. When I flare I take immodium and some leftover Pentasa I have. Other things I take are Methotrexate, Omeprozol, Zoloft, and then, as needed for neck pain/headaches I take Robaxin, Relafen and Norco. I also have Valium when my anxiety gets out of hand and Xanax if I can't fall asleep, but I rarely take that. This is all a big change for me as up until 5 years ago I didn't have a medicine cabinet. I took (way too much) ibuprofen trying to control my pain and that was it.

That's my story and I'm stuck with it. Looking for some support and suggestions. I'm finding I can't talk about it with normal people as they just don't get it. There is one guy at work with CD worse than me and we talk pretty regularly.
Posted 7/17/2015 12:25 PM (GMT 0)
Welcome! I am sorry for the diagnosis. Here are some brief thoughts as I've read your post:
-not much you can do about the kids and job, but make sure to take some time to de-stress. Stress will trigger flares with IBD. However, don't use it as an excuse to do nothing or your marriage will struggle! :)

-you NEED to get on a maintenance medication. Just taking leftover meds for a flare is a really, really bad idea. Having frequent flares and not being on something to help you stay in remission causes a huge increase in your risk of cancer, perforated colons, resections, and other awful things. Every single person on here who has stopped meds (or their strict diet, like SCD) has hugely regretted it later.

-haha, yeah, this isn't a sexy disease that you can talk with people about, especially at the dinner table and casual conversation. We each handle it differently: some of us don't tell anyone really. I am pretty open about it, but I've been hospitalized 30 times in the last 3.5 years, so it's not something I can really hide. I'm glad you have a coworker to talk to. This forum has been my lifesaver the last 5 years since diagnosis.
Posted 7/17/2015 12:45 PM (GMT 0)
Thanks for your thoughts. I by no means use it as an excuse. I was using those things as an excuse to not properly manage my diet. :) My wife is very empathetic and is very supportive. I have seen that stress is a major trigger. My anxiety meds have helped no doubt. As we both have high stress jobs, my wife and I work together very well and are very understanding of the others needs. My marriage is the least of my concerns thankfully!

I had no plans of continuing to use leftovers. My hope is the Humira will be my silver bullet for RA and CD for a while. I need to call his office today to check on my prior authorization. I just wanted to be open with it here to know if there were any serious risks in doing so. On your comments I think I will stop the pentasa. I figured it was harmless. Generally I could see all the little granules come out whole anyway. lol

I don't get into specifics with people. I have gotten some less than helpful, down right insensitive comments. Most people know I have it. I am a pretty open person. I am trying to stop being so open as the endless suggestions of what I need to do from people who have no clue wears on me.

Thanks for sharing. I find it very therapeutic to discuss my issues with people who understand because they live it.
Posted 7/17/2015 7:52 PM (GMT 0)
I'm a little confused here. Do you have a diagnosis of rheumatoid arthritis?

Are you saying you have Crohn's disease based entirely on the two blood markers? If so, I don't agree at all. The two blood markers mean you *might* have Crohn's, but by themselves that is not enough to make a true diagnosis. Even doing the Prometheus test, which uses about 6 or 8 blood markers plus more things, is at best 80-90% accurate and still not enough to make a formal diagnosis.

Instead of getting the capsule endoscopy done, you need a small bowel MRI called an MR enterography. That will show any small bowel issues. If that comes up negative, then the capsule endoscopy is maybe worthwhile if you can get it approved.

But the thing is, even if one of those shows mild inflammation, it could be from a number of things other than Crohn's. RA itself can cause mild bowel inflammation and symptoms similar to Crohn's. NSAIDs and other meds can cause inflammation as well.

Without more tests and ideally some biopsies, you can only say you *might* have Crohn's.

One final note: I agree with scifigal2k that taking Pentasa isn't going to do a thing. It concerns me that your doctor even prescribed it. To me that's another indication that the doctor doesn't know enough about IBD to make a diagnosis.
Posted 7/18/2015 12:04 AM (GMT 0)
I do have a diagnosis of both RA and CD. Everything on both scopes came up negative. I have all the symptoms and sensitivities to food. I am looking for a new doctor for the crohn's. I am happy with my rheumatologist. I just got the letter in the mail today that I was approved for Humira. So hopefully that will help with many of my issues.

I am here to learn, so thank you for sharing your thoughts. I am going to see a new doctor and try to get a better course of action on the crohn's.
Posted 7/18/2015 12:37 AM (GMT 0)
Glad to hear you got approved for Humira. Hopefully that helps both - it should.

Also glad to hear you are finding a new GI. As I said before, you *might* have Crohn's, but it's extremely premature to make that diagnosis based on two blood markers and symtoms with no inflammation found. Hopefully your new GI will run an MR enterography and other tests to figure out whether or not you really have it.
Posted 7/18/2015 4:05 AM (GMT 0)
I'm so glad I'm not alone. I've had IBS for 16 years with flare ups and remission times but i can't honestly remember what it feels like to have no gut pain. The last month has been the worst ever. With the most severe symptoms ever. I've had one gastroscope already and a colonoscopy in the next couple of weeks to determine if I have Crohn's. My GI believes that's what it is. I'm concerned that I'll will once again be told it's just IBS live with it, take a pill. ugh why is it so hard to figure it out
Posted 7/18/2015 2:19 PM (GMT 0)
I guess I wasn't clear about my scopes. They did show inflammation. The biopsies came up negative. I gave up on the path that doctor wanted me to take (getting stool samples to show blood before I could get the camera test.)

Maybe I'm reading too much into the responses here, but I'm not feeling much support or very welcome here. I understand you are trying to help and give guidance. I may be overly sensitive given the feedback I get from "friends." I have dealt with food sensitivities for 15 years. I have had a few "accidents" on the way home from dinner. I see blood on the tissue on occasion. I wake up in the middle of the night with urgent needs. I don't know what you call it. I don't know how to get it treated. I'm just frustrated.
Posted 7/18/2015 4:39 PM (GMT 0)
Sounds like Countrydad also has RA though which is what Humira was actually designed for (not IBD) so there's no issue with him going on Humira since he has RA and if countryman does have CD then hopefully it will help with that too, if he just has IBS it won't do a thing for his IBS.
Posted 7/18/2015 7:22 PM (GMT 0)
countrydad, I apologize if I come off as "unwelcoming." I know the frustration of trying to get a diagnosis. It took about 18 years of me getting sick on and off before I was diagnosed - and the biggest clue was that my brother suddenly developed ulcerative colitis. Before that I didn't even know what Crohn's was.

I don't discount your problems or symptoms at all. My point is that just as Crohn's can lead to symptoms similar to RA, RA can lead to symptoms - and inflammation - that is like Crohn's. But that doesn't mean a person has Crohn's. You might, we don't know. We're just saying your doctor was premature in giving that diagnosis.

You're certainly welcome here whether or not it turns out to be Crohn's. I'd very much appreciate that you keep us updated as your new doctor helps you figure it out.
Posted 7/18/2015 9:05 PM (GMT 0)
It's ok. As I said I am a little over sensitive and defensive about most of my health issues.

I will certainly be back with updates. Thanks for trying to help.
Posted 8/5/2015 2:58 AM (GMT 0)
Hi there :)...countrydad, scifigal2k, beave, Corrieandcrohns, BRelaxed, and pb4... if I got everybody on this thread tonight. I'm a newly diagnosed, newly alienated, newly freaking out, newly anxious, newly scared, newly terrified 36 yr old woman, with Crohn's disease. So...again...hi. I'm deeply relieved to find you all here. I read through several public threads before I joined this site. And why? Because you are the most positive, caring, and supportive forum while still being completely straightforward and realistic about the reality you are living with this disease. So, thank you. Because today, for the first day since my diagnosis, I don't feel scared of not knowing or of being alone in my disease.
Posted 8/7/2015 3:59 AM (GMT 0)
i completely understand what you mean with no one understanding, they may think so just because theyre there right next to you the whole time but it doesnt matter. youre the one having to changed everything. not them. i know it hurts to say but i get it.
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