Please Help

[allie_469]

Hi Everyone

I am a 28 year old female who has had arthritis for 5 years. I have a rheumatologist and in the begining he would always ask me do you have any stomach problems and I would always say no and he would always say well at your age you dont have arthritis this bad unless you have an auto immune problem. Well until about a year ago my stomach problems were never bad enough or uncrontrollable to talk about, my husband didn't even know what was going on. And then 2010 came and so did all of my problems. So I have lost 50 pounds in less than a year and have seen my GP and was honest with her and she ran every blood test and sent me to have a colonoscopy and endoscopy with GI. After those tests came back normal he said well you must have IBS. Then after my GP knew that thier was something going on she sent me into have a cat scan. Well Im very allergic to iodine so they put me on 20 pills of prednisone for 2 days proir to the appointment and I was feeling amazing, no bathroom trips 7 times a day, no nausaua, no fevers, no throwing up no dizzyness and I was able to eat I actully had an appatitie. Well those tests came back normal and my GI said well not sure where to go from here. And my GP said well thier is obvioulsly someting imflammatory going on if you felt so good with the prednisone. I also have been to the Er and had an ultrasound and have had the pill cam, all normal. So Im on Lomotil 5-6 times a day and that helps however not a cure for the ER Bathroom trips. Sometimes I have to starve my self for two days so I wont have to use the bathroom at work and that makes it better. My GP finally put me on Prednisone 60ml a day for 2 weeks and them 40 then 20 and then 10. Im on the 10ml a day till tomorrow and now that I'm weening my self off of it my symtoms are back and worse then ever, its like payback for feeling so good for 3 weeks. Im just looking for any advise on any tests or any drugs that I could talk to my GP about to help with this issue. I also went to another specialist GI and begged him to do another colonoscopy sence it had been 7 months since I have had one and he said no if everything came back normal it always will, so he sent me to the Mayo clinic and the Mayo turned me down and said thier was nothing they could do for me. Please help!!!!

 

[Cat-a-Tonic]

Hi Allie, welcome to the forum and the club. Wow, that's a quick prednisone taper! You might want to tell your GP about your symptoms coming back as you are tapering - a longer taper might be beneficial. As for your GI and the Mayo clinic not being able to help, all I can suggest is to keep looking around for a new GI. If you tell us where you are located then someone may be able to make a suggestion of a good doctor. I can tell you this, with IBS you don't get unintentional weight loss, and you also don't respond to prednisone - so it sure doesn't sound like IBS to me! As for the Lomotil, if possible try not to take that stuff too much. It's basically the prescription version of Imodium, and both of those can change how your bowel works if you overdo those meds. I believe it's called lazy bowel syndrome, and from what I've read, you don't want it! Good luck, don't give up looking for a GI who takes you seriously and don't stop fighting for answers.

 

[Angrybird]

Hi Allie and welcome. I am sorry to see younare having such a hard time of it, I agree about trying different docs until somone agrees to have another look at things. When you had your first colonoscopy had they given you any meds at that time? The theory that if one colonoscopy is normal then they will all be fine is utter rubbish!

 

[dannysmom]

My son is undiagnosed but his rheumatologist thinks it is probably Crohn's and he said he would prescribe Humira for him to try. He said he uses Humira for joint pain. GI's use Humira for Crohn's. You may want to ask your rheumi about it.

 

[allie_469]

My Rheumatologist said that that drug is very dangerous and he would not prescribe it for me, because I went in and begged him for it!

 

[allie_469]

Hi again, So do you just keep going to GI after GI and beg them to do another round of tests, because the second guy that I saw said that he would not do any other tests. So Im just not sure what to do! And they would not give me any drugs at all and said their are no drugs for IBS, which is not what I have so I feel stuck. My GP is the one who gives me my lomotil and prednisone. Do GI ever give you drugs that work like prednisone with out the side effects if they have no diagnosis. Thanks again allie

 

[dannysmom]

What does your rheumi give you for your arthritis? (I hope it is not just NSAIDs because they are bad for your gut) Humira does have a long list of risks ... and my son's GI said last year he would not try meds like that without further evidence of Crohn's (especially because prednisone made things worse). I was very surprised when the rheumi offered it for my son ... and have caution too.

There are other drugs immunosuppressant medications (ie 6MP) ... I am not familiar with ones used for arthritis.

 

[Angrybird]

Hi, the only thing that I know of for both arthritris and crohns is Methotrexate, unfortunately this is another nasty one with lots of potential side effects and it requires very close monitoring with bloods. I would keep on at either your GP or GI or try someone new and be very firm. They need to realize that you will not be put off and want to get better.

 

[allie_469]

Has any ones doctor put them on any drugs like entocort with out a diagnoses like crohns or colitis?

 

[Cat-a-Tonic]

Yes, I don't have a diagnosis and I have been on prednisone (for just a short time to see if I responded to it, which I did), and Entocort (for 7 months), and now I'm on Asacol. My GI and GP both feel that I probably have IBD and are okay with giving me treatments that are relatively mild and safe. I had to fight for it - I pretty much demanded to try prednisone, and when that worked my GI felt it was safer for me to take Entocort. Entocort got me feeling much better and put me most of the way into remission. I then asked to try Pentasa, and my GI thought Asacol was a better fit for me (he thinks I have either Crohn's or microscopic colitis - Asacol works on the terminal ileum and colon, so it would work for either TI Crohn's or microscopic colitis). I've been ill for over 2 years now and was unmedicated for the first year. I've been doing a LOT better since I've been on these various medications.

Is your doctor looking to try you on Entocort? It's a pretty safe med, it is a steroid but it's not systemic like prednisone is so there's a lot less risk of side effects and the side effects are much less serious than with pred.

 

[allie_469]

Well I'm getting off of pred tomorrow and I'm so sick, so I want to ask about those drugs tomorrow at my gp appt I think I should go in and beg for it is one better than another?

 

[outlier]

hi, i'm your age (or almost at 29). i have both both arthritis and crohns. it's unclear which started first for me and i was dx with in a few months of each other. it sucks be this young and having such medical issues.

why is rhematogist against humira? are they also against remicade?

what type of arthritis do you have?
i have ankylosing spondylitis

 

[allie_469]

Rheumatoid, and ill take it any day over my stomach problems! I can,live with the pain from that. No one will give me anything it seems since they dont have a diagnosis.

 

[allieinwonder]

Hi Allie (I'm Allie too!),

Your story sounds a lot like mine recently. I have been put on pred as well, and that is exactly how I got my diagnosis. I feel absolutely fantastic when I'm on pred (10mg or higher anyway), and every time they taper it my symptoms get worse. When they saw how well I did on the pred, they took my symptoms, matched it to an AI illness, and gave me a diagnosis. Seems like your doctors are on their way to do the same thing.

My best advice is to be patient. These things have a way of working themselves out.

My doctor is about to put my on Plaquenil, but this is used for Lupus and other AI illnesses like it. Lupus can mess with your gut like Crohn's can. I have inflammation of the tissue surrounding my small intestine, not the intestine itself. It makes me have D, nausea, and pain just like Crohn's. Lupus can also be triggered by foods like Crohn's. All my GI tests were normal though (upper endoscopy, colonoscopy, CT scans, small bowel follow through, pill cam). A major difference in testing between Lupus and Crohn's is that your ANA will be positive with lupus, but it usually is NOT with Crohn's. This is a simple blood test.

 

[Rebecca85]

Allieineonder- thanks for that info about the ANA! I have had a (mildly) positive result before which was just dismissed, but I guess that is more support for something other than Crohn's going off.

 

[allieinwonder]

no problem Rebecca! I didn't know about it until I went from a GI to a Rheumy and they found a high positive result.

 

[cb323]

Hi Allie, I'm also trying to figure out if there is a link between my RA and my tummy problems. I have also now lost 50 lbs in the past 9 months. All test, other than CT's, have been normal. My GI is convinced its Crohns and wants more test for proof. He has started me on Pentasa while looking for dx. I'm not currently on any meds for RA. I'm not having any swelling of joints, just mild nagging type pain. I agree with Angrybird, just because the 1st colonoscopy was normal doesn't mean the next on will be. Your problem may be in an area that they were not able to see. Please keep looking for a GI that will be aggressive in looking for an answer for you.

 

[allie_469]

Re Test Results

Thanks for all of your info! My doctor ran the ANA test back in November 2010 and of course everything along with ALL my test have come back normal! So I wonder if that test is worth running again since its been 14 months? My last day of prednisone was on Friday and now I have been off of it for 3 days and I swear I have never felt sooooo awful, all my stomach problems came back with a vengence! I am as sick as I was ever but on the drugs I felt "nomal" I know its only been 1 1/2 years since I felt so good but I dont remember feeling so good with NO symtoms I was like everyone else but I was on it for a month and I gained 14 pounds however I would rather weigh more and feel good to be honest, so doesnt that mean that since that worked that thier is something wrong with me? My GP agrees with me but she is at a loss for what she can do too? We have ran all the tests that she can think of and she doesnt know what to do either! Please Help!!!

 

[Philfun]

Hi. Really sorry to read of your situation. Try taking Psyllium husks/powder. It won't cure your CD but it may drastically reduce the number of BMs you have each day. (Least it did for me). A 5 gram sachet costs about 20 cents where I live (in the Philippines) and should be affordable in the U.S. Take 1 sachet a day first thing in the morning. With me, it took about 3 days to start working and I now have only 1 BM a day. Put it in a cup, add warm water, add a bit of thin juice (I use cranberry) to help the taste (nothing helps the texture), stir vigorously and gulp it down.

Good luck

 

[allieinwonder]

Allie_469, if the pred worked, it is NOT IBS. That is a key clue that something inflammatory is going on, because that's what prednisone does, it tells the body to stop having the inflammatory reaction to "attacks". If it was an infection that was causing your symptoms, you would have gotten worse, because your body stops fighting it.

Thats good that you gained the weight while on it! I've been on pred for almost a month now too and I have dramatically lost weight, not gained it! O.O But I'm not on enough pred to stop my AI disease completely.

I would, at this point, see if you guys can look at all of your symptoms as a whole and see if you guys are missing anything. I know my list of symptoms is HUGE, and to give it all to my doctors I had to write it all down before my appointment. You can forget to mention things if you aren't prepared, and one symptom not being mentioned can make a huge difference!

Hang in there!

 

[allie_469]

Thanks for the info!