lots of questions

I just posted this on the Crohn's forumn without much response and wanted to see if anybody here has had this experience with arthritis, crohn's or UC.  Thanks

Hi everyone!

I don't post very much because I'm kind of shy but I sure enjoy reading everything as I have gained a lot of information from everybody's questions and experiences.  I have a few more questions about what I am experiencing.

In 2000 I had a colonoscopy and it showed areas of inflamation and I guess blodd????  only in my colon - nothing showed up in my small intestines.  Anyway the Doc. took biopsys of the inflamed areas and they came back indiscriminate????  He stated in his notes that he suspected Chron's disease but could not confirm diagnosis.  I was started on Asacol and seem to do great until 2001.  I had just gotten married and we were getting ready to move from the midwest to Arizona.  What happens??  I start getting all of the symptoms I had the prior year.  Right before we moved I had another colonoscopy and the same thing occurred.  I had areas of inflamation in my colon but nothing in my small intestine.  My doctor put me on a course of steroids and upped the Asacol to the max dose and told me to find a GI as soon as moved and get further treatment.  Well by the time we got to Tuscon I was feeling great and didn't see a GI.  I had an appintment with an IM doc. and he goave me all of my Asacol scripts.  I had no further problems.

In 2005 I had my second child.  Right after he was born I began to get severe joint pains and was so tired and stiff that some days I couldn't get out of bed.  This went on for 7 months before I could actually see visible inflamation in my joints.  Therefore, I did not seek treatment b/c I actually thought I had post partum depression.  When my hands started swelling so much that I looked like I had broken them I decided to see a Rheumatologist.  She immediately put me on a course of predinose and started sulfaslazine and then semt me to a GI to see what was going on with my colon.  I had a clean colonoscopy at that time.  All of my blood tests came back negative for RA and even my rates to measure inflammation came back normal but my x-rays showed joint damage in both my wrists and my lower back.  The sulfasalazine was not calming my inflammation so I recently recived a cortisone injection and was started on methotrexate.

In July I was admitted to the hospital with a diagnosis of an ileus.  I was given golytely and finally went to the bathroom and was sent home with the GI telling me there was no way I had crohns and I had IBS and told me to take miralax every day.  I tried that for two solid weeks and it only made me throw up so I stopped.  Well know I can only go to the bathroom if I take golytely and throw up for about three hours before I have a BM.

Through the advice of a lot of you I did get a new GI and I have an appointment on Friday.  I'm just wondering if any of you can give me any of your wisdom. 

Thanks for you help and I am so sorry for the long post!

Theresa

I actually have pain in my shoulders, ankles and toes. In fact when I got the shot of cortisone both my shoulders hurt but my right one was so bad I lifted in up in the shower one day and I heard a pop and then I couldn't lower my arm for a few seconds (pretty scarey). I figure my right one is worse because I'm right handed and I have a 1 and 3 year old. We didn't get an x-ray of my shoulder because when I first had x-rays I was only felling pain in my hands, wrists, feet and back. Although the x-rays of my feet looked good.

I'm so confused! My Rheumi. says I have inflammatory arthritis due to either my crohn's or UC (don't know which one) but according to the GI I don't have these. I'm not sure how he would explain my first two colonoscopies as my old GI gave me the pictures and notes from those and I did give them to the GI to see. I love my Rheumi. and would go with her diagnosis since my GI problems began much earlier than my arthritis.

Heck, I'm lucky she has the x-rays to proove to me that something is wrong because at this point I almost feel like it's all in my head and I really have nothing wrong with me. Crazy Hugh ;o)

Anyway, thanks for your support.

I still take the sulfasalazine and am now taking the methotrexate along with it.

My Rheumy has mentioned RA. However I just started the Methotrexate in July so we want to give it at least 3 - 4 months to see if it works. Then funny thing is that since I started the Methotrexate my joints have felt better and I have had only mild inflammation, however, that is when all the other stuff with my gut came about. I see my Rheumy again in September and will certainly be discussing all of this with her.

Although the Methotrexate seems to be working it is making my hair fall out and I seem to be really tired on the day aftter I take it.

Thanks for your help an advice.

Thanks Ducky! I really appreciate your help!

Theresa

Theresa,

Your story sound so familiar. My rheumy also feels I have IBD, but two GI doctors will not, or cannot, confirm that. My rheumy is basically treating me for it even though I don't have it. He started me on sulfasalazine, but I'm evidently allergic to it. Now I'm on the biologics, Enbrel specifically. Enbrel supposedly does not treat IBD, but rheumy feels it is controlling my GI symptoms. What is it with GI doctors that you have to be dying with all kinds of damage throughout your intestines BEFORE you get a diagnosis of IBD?

My last GI doctor told me I had IBS as well; she stuttered when I asked her how IBS could cause ulcers in my colon. Rheumy just shakes his head when I tell them these stories.

If you have a good GI doctor now, you're on the right road. MTX may do wonders for you--the brief amount of time I took it, it did great with my joints. Almost took the pain completely away.

Best of luck to you--and let us know how you're doing.

Elcamino

Thanks for your story Elcamino. It sounds like we both have the same symptoms. I'm not sure why GI Docs. act the way they do but they all seem to be the same. Hopefully this new one will be good and we'll get to the bottom of something.

It is funny - like in your story above, when I was in the hospital and the GI doc. kept saying I had IBS I asked him if I had IBS than what is causing the swelling in my joints? He just ignored my question Aghhhhhh!

Thanks for everyone's reply. I'll let you all know how Friday turns out.

Bone Scan, Dave? Nope--never had one, although it's a standard listing on my treatment form (required for insurance reasons). I thought the only reason they would order a bone scan would be if I were to go on steroids, or otherwise develop osteoporosis all on my own with prednisone? I wonder what it tells you about crohn's?

Yalinda, I'm truly feeling the lack of mtx--but I'm no worse off than before I went on the mtx. Mornings are absolute nightmares, but I'm not so darn tired anymore--and my cough is completely gone. The only thing I have is an allergy cough when I walk outside--but I've had that for years.

I have a chest x-ray on Wednesday, and if things look good I'll start the mtx rechallenge on Friday. I'm a bit nervous because a lot of things I've read indicated that the incidence of lung injury is fairly high with a rechallenge. Yet, my rheumy stressed how important it is to learn if it was the mtx causing the cough, or if I have a pre-existing lung issue. I think he's planning on ordering a chest x-ray everyweek, and at the first sign of something awry, he'll take me off the mtx. I guarantee if I start couging again, I'm stopping it immediately. It really bites because out of all the drugs I've had this past year, mtx (combined with the enbrel) was the only thing that worked. Don't know what else I can try--certainly don't want to take two biologics at the same time. Enbrel works a bit, just not good enough. I'm sure my rheumy can suggest something. I'm hanging in there-- I hate all of this waiting!

How are you doing? Nice vacation? Drink a couple for me--oh, you're on mtx, though--sorry.

Elcamino

You are so nice!!!!! I really appreciate all of your help.

Hey Theresa,

 

how you doin'?  Have you or your rheumy thought about starting a biologic for your RA?  'Cause I'm wondering if maybe you should think about Remicade?  I am on Enbrel and it works well for me, and it may even help some of your GI problems.  A lot of people have experienced hairloss and nausea with Methotrexate, if it gets to the point to where it is just unbearable, you need to talk to you rheumy and see about something else.  Maybe even just adding Enbrel or something to the mix.  Do you still have an appointment with your GI doc on Friday?  I was supposed to have an appt with my GI doc yesterday, however, we have a storm coming through here and I had to reschedule it.  This website has some info on Methotrexate as well as the side effects to look out for..

 

Write soon and let me know how you are doing..

 

Hugs - Duck

Hey Theresa, I am in Charleston, SC... right where they "thought" the storm was gonna hit... fortunately for us, it looks like it is going to hit north of here instead, we are getting a lot of rain, and some wind right now.. we'll see what happens later... I think you can take Methotrexate and Remicade at the same time.. maybe that will be the cocktail that is right for you? Well, I'm off to check on the weather again... Good idea on making a list for your doc, it will help him with your diagnosis... good luck to you and let us know what happens! Talk to you soon!

Duck