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TheresaT
Regular Member


Date Joined Aug 2006
Total Posts : 41
   Posted 8/26/2006 10:05 PM (GMT -7)   
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

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/26/2006 10:26 PM (GMT -7)   
Hey Theresa... glad to have you, I hope we can answer some of your questions. Are you still on the sulfasalazine? Is the pain just in your wrists and lower back? Or do you have it elsewhere? I'm glad you are seeing another GI soon, please keep us posted on how you are doing... HUGS - Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

TheresaT
Regular Member


Date Joined Aug 2006
Total Posts : 41
   Posted 8/26/2006 10:42 PM (GMT -7)   
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.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/26/2006 10:58 PM (GMT -7)   
I don't blame you for being confused... I don't understand why your GI said you don't hve crohn's or UC when there is an arthritis that goes hand in hand with that.

I am so glad that you are getting a second opinion, and soon. Has your rheumy said anything about RA or AS?

How is the methotrexate working for you?
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

TheresaT
Regular Member


Date Joined Aug 2006
Total Posts : 41
   Posted 8/26/2006 11:39 PM (GMT -7)   
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.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/27/2006 12:01 AM (GMT -7)   
Hhhmmm... interesting... let me do some research and I'll let you know what I come up wth... You hang in there, we'll get ya' through this!

Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

TheresaT
Regular Member


Date Joined Aug 2006
Total Posts : 41
   Posted 8/27/2006 8:30 AM (GMT -7)   
Thanks Ducky! I really appreciate your help!

Theresa

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 8/27/2006 1:34 PM (GMT -7)   
theresa, what dosage of mtx are u on? is ur hair thinning or actually falling out?

i too tend to be very tired after taking my mtx. i take friday night now to help with the fatigue. but i am tired aften anyway. i finally dyed my hair again after sometime cuz i was afraid dying it might promote hair loss but i figure by now i was safe. i shed a bit but no real loss.

if i understand it correctly your xrays showed inflammation? mine did also which was one of the diagnosing factors for my RA. well hopefully ducky can further help you. yalinda

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/27/2006 5:53 PM (GMT -7)   
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
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 8/28/2006 6:43 AM (GMT -7)   
elcamino how r u feeling without the mtx? pain returning? cough gone? whats up doc?(visualize a rabbit)

yalinda

i know i am warped~ on vacation! veranda beach- my porch for those who so not understand my humor.

TheresaT
Regular Member


Date Joined Aug 2006
Total Posts : 41
   Posted 8/28/2006 6:56 AM (GMT -7)   
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.

RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 8/28/2006 2:39 PM (GMT -7)   
I've no idea if this will be helpful to any of you, but have you hd a bone scan? The reason I ask is 'cause my rheumy snt me for one a few years ago that apparently told her all kinds of stuff. She took me super seriously after, took me in a different room and started talking to me like I had ebola. Anyway, the reason I mention it is because when she ordered it, she said "usually a bone scan is used for crohn's patients, but I'm curious about what your results will be."
-SLE, RA & PA....it's all about the acronyms!

-Current meds: Plaquenil, Sulfasalazine, and a little NSAID du jour for flavouring. Mmmmm NSAIDs.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/28/2006 5:08 PM (GMT -7)   
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
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/28/2006 7:50 PM (GMT -7)   
Hey Theresa.. I haven't forgotten about you.. still checking on some things, and I'll post what I find (if anything good) soon! Just didn't want you to think I forgot ya! Hang in there... Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

TheresaT
Regular Member


Date Joined Aug 2006
Total Posts : 41
   Posted 8/28/2006 8:00 PM (GMT -7)   
You are so nice!!!!! I really appreciate all of your help.

RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 8/29/2006 2:53 AM (GMT -7)   
I've been googling bone scans and can't find anything about it relating to crohn's. Maybe I'm blowing smoke out of my you know what, but I distinctly remember her saying that and me thinking "oh great I'm going to end up with a new disease to add to my collection". Dunno, anywho, keep us posted!
-SLE, RA & PA....it's all about the acronyms!

-Current meds: Plaquenil, Sulfasalazine, and a little NSAID du jour for flavouring. Mmmmm NSAIDs.


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/31/2006 9:10 AM (GMT -7)   
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


Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
A little about me...

Post Edited (Ducky) : 8/31/2006 10:14:24 AM (GMT-6)


TheresaT
Regular Member


Date Joined Aug 2006
Total Posts : 41
   Posted 8/31/2006 12:35 PM (GMT -7)   
Hi Duck.

Thanks for all of your help. I see my GI tomorrow. I've never seen him before so I am pretty nervous. I have made a list of all the symptoms I have had over the last couple of weeks so I don't forget anything.

My Rheumy did mention Remicade but wanted to give methotrexate a shot first. I have been on it for five weeks now. I see the Rheumy again in a couple of weeks. I figured I would give the side effects until then to go away. I know a lot of peole have many good things to say about Remicade so maybe it will work for me??? I doubt I'll get any answers form the GI tomorrow but maybe Remicade is what I need to get my gut and my arthritis under control.

How is everything? It looks like the storm wasn't as stromg as they thought. Did you get any damage? I agree with cancelling your appointment I wouldn't want to take any chances with sticking around after what happened last year.

Are you in New orleans or Florida? I hope your safe and good luck.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/31/2006 12:54 PM (GMT -7)   
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
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/31/2006 5:15 PM (GMT -7)   

hi theresa,

wow...it is quite the ordeal going through all of this isn't it?  you've recieved some great advise so far.

what i think?  something may just show up...in time.  i know tha stinks to say, but sometimes it takes a while for certain diseases to really say "hello here i am!".

RA and AI diseases are sometimes negative in blood labs but a pt can have all the positive objective clinical physical symptoms that could be used to gear a doc to a definitive diagnoses.

i think we've all been through this to some degree.  for years my docs jumped between RA, ALS...RA or Lupus...RA or Scleroderma. it was a  mess.

the docs will take into consideration everything they see...so negative labs aren't a bad thing...if there are strong physical findings. also the way you respond to meds is a strong indicator as to what might be wrong.

glad to have you here @ HW.  let us know how everything goes.

sincerely,

erin :-)


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.

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