What is going on with me???

[haakjess]

I'm new to the site, I was diagnosed with Crohn's in 2004. I had 2 hospitalizations, one after each child. It seems birth was the major trigger for me. I have not had another diagnosed "flare" since. That's not to say I haven't felt bad though! I was taking Asacol, Llialda, and now Apriso to maintain remission. Around Christmas I went to the ER, certain I was having a flare. I had constant, violent diarrhea for a month and lost 10 pounds too quickly. They did a CT and checked my sed rate and everything came back fine. I got a colonoscopy and they said it looked good.

When they got the biopsy back, they found microscopic colitis. They put me on Entocort for 6 months. It is now July and I am weaning off the steroids. I am down to 1 a day. 3 months ago, I noticed major pain up and down along my spine when I would go to lay down or put my back up against a chair. Very strange. Now it has been 3 weeks and I have been suffering from debilitating joint pain. In my fingers, wrists, shoulders, hips, knees, ankles, and jaw. I am losing more hair than normal. I know something is definitely wrong. I made an appointment with a rheumatologist the earliest I could get was August 10. So I called my GI doc and they said they would try to get me an earlier appt. I have not heard back from them. That was 2 weeks ago. Figures. So I had my Primary Care Doc order labs and xrays. She found osteoporosis in my back. No surprise there considering all the steroids. But nothing wrong with my blood. They messed up on my sed rate, so we are waiting on that, but I cannot believe there was no ANA or Rheumatoid factor. Nothing except elevated liver function. From all of the meds probably.

When I got the news, I should have been happy, but instead I felt like crying. I know the pain is real but I have been getting no answers. It would feel better if I knew what it was so I could know how to fight it. This is very familiar to when I was suffering from a crohns flare and I hadn't been diagnosed. I was in and out of ERs for 18 mths before someone decided to give me an abdominal CT, and then finally diagnosed me with crohns. They used to just fill me up with fluids, prescribe me antibiotics and send me home.

Until I stumble upon an enlightened doctor, I am feeling absolutely terrible and I have had to hole up in my house. My poor kids are so bored, but I don't have the strength to go out and play. Plus the heat is nearly intolerable! 100 degrees today. Humidity pretty high too. Sorry for the long note, but it feels good to just get it out. No one understands and I know there are people who are probably starting to think this is all psychosomatic. Thanks for a place to vent. Also, if anyone finds this familiar and has any ideas for me, I am dying to hear them. Thank you. Jess

 

[Crohn's 35]

:welcome: to the forum!! So glad you found us. I know exactly how you feel! I was dx 2 years after my daughter was born and it was tough living in an apt and I was on the couch in severe pain and sick all the time. She was a good girl and I felt so guilty not being able to take her out.

Have you been on any of the biologics yet? I too was dx with microscopically leaking stuff, but they thought it was appendix... then it got worse. 2 resections later, and I have had every drug available in Canada and waiting to get a teaching doctor or specialist in Toronto.

Some people do amazing on Remicade or Humira, hope you get some relief soon. You can always come on here and vent or ask questions.
Welcome aboard! Great people here!:hang:

 

[haakjess]

Thank You

Jettalady, Thanks for replying. I managed to avoid the biologics after the flares, but that was 4 years ago. I am ready to try it now, if it will help. I need to know what I am suffering from first. Does it sound like autoimmune to you? I thought so, but the blood results showed everything normal.Thanks again.

 

[Dexky]

Hi Jess and welcome!! Normal bloods seems to occur often with the sufferers on here. I hope you find some answers and relief soon. Good luck!!

 

[DustyKat]

Hi Jess and :welcome:

It's certainly right that normal results are not uncommon when people are flaring, that was case with Roo, her inflammation markers were never raised.

It may very well be that you don't have Rheumatoid Arthritis but Extraintestinal Manifestation of your Crohns. Many people suffer with joint pain and swelling when their Crohns flares. One of Roo's relatives was treated for RA for 4 years before they worked out it was Crohns disease causing the problem.

I hope you can get into to see your doc soon, maybe ring and badger them, and get some answers and treatment!

Take care,
Dusty

 

[haakjess]

Thank you DustyKat. That makes me feel better, knowing that this has happened before and I'm not going crazy. I will definitely bring this up when I talk to my GI doc too.

 

[Astra]

Hi Jess
and welcome

so sorry you're suffering like this, but it may be exacerbated by the withdrawal of Entocort, I know this, cos I am too! and I've had two doctors confirm this.
my joints and muscles are aching so much, I can hardly walk! I feel better walking around and moving tho! sitting and lying down cripples me! I don't know what the answer is, but I'm riding this storm, and taking one Entocort every other day for one more week, then I'll stop.
as regards to pain meds, don't take any NSAIDS tho, these are advil or ibuprofen, altho great for joint pain, a big no no for a Crohnie!
I take Codeine Phosphate which is a great pain killer but also combats diarrhea as well.
I also have Ibugel, this contains ibuprofen, but its topical gel and helps any swelling in my knees and ankles. I take Syndol too which contains doxylamine, a muscle relaxant (yes, I'm rattling!)
hope you find some relief soon, I'm hoping I will once I'm off this crap!
glad you found us for some support and vent away! always someone here for you!
lotsa luv
Joan xxx

 

[haakjess]

Thanks for the advice. I am hoping it is withdrawl from the steroids. That means there is light at the end of the tunnel. I am down to 1 entocort per day for the next 3 months. I am taking vicodin 7.5 3-4 times a day. I am so happy I joind this site. I was so scared and confused, now I know I have a good support system who knows exactly what I'm going through. Than you so much.

 

[haakjess]

I received the result of my sed rate and that was normal too. My physical therapist said there are things happening in my pancreas. She is not your typical therapist, she practices Manual Therapy. It is amazing what she can do, she can tell where there is trouble in your body. Anyway, I'm wondering if anyone has had any trouble with their pancreas and if it is at all related to autoimmune issues. Thanks again everyone.

 

[DustyKat]

I'm not sure what your pancreas issues are but Roo had indicators with some of her blood results that she pancreatitis, her pancreatic enzymes were extremely elevated. That was what her first admission to hospital was for but it turned out to be a red herring. It all stemmed back to her Crohn's and inflammation of the bowel. That is the one and only time it appeared her pancreas was involved though.

 

[massa]

Hi,
am suffering with a flare up of Chrons, my joints are very very painful, fingers,wrists, ankles hips and my back hurts just inbetween the shoulder blades. This happens everytime i have a flare up....
I'm on Methotrixate at the moment for both, but they don't seem to help much.
I'm awaiting an op in 3 weeks time for a small bowel resection. so hopefully all this pain in my joints will go away once ive recoverd from my op..

Good luck in whatever you find that helps
Massa
x

 

[haakjess]

I hope you feel better soon. Have you tried Remicade or Humira? Is methotrixate a biological too? My GI doc is on vacation right now, but probably after I see him, we will go the Remicade route. If this is in fact an extraintestinal complication of my Crohns. I called CCFA and told them my symptoms and she said that this affects 25% of Crohn's patients, so I'm betting thats what I have. Good luck with the operation. I hope they are giving you good meds to ease the pain. I am taking vicodin, thank God for that otherwise I wouldn't be able to get out of bed in the morning.

 

[Astra]

Hiya Jess

update on me!
I'm off the Entocort now and have no joint or muscle pain whatsoeva!
from being crippled and in agony, I'm ok
wanted you to know this to help you with any anxieties and that there is light at the end of the tunnel!
hope you're ok hun
xxxx

 

[haakjess]

That's GREAT! I'm so happy for you. Thanks so much for the update. I'm still in agony, and I am ready to start remicade just to get rid of this pain. I don't know why my GI is keeping me on 1 per day for 3 months? I feel like just stopping it now. I have been on one a day for a couple weeks now, I know it isn't wise to get off meds without the Doc telling me to, but he is still on vacation. They are capsules, so it's not like I can split them. I think I will.....Enjoy your good health now. Thanks for keeping me posted.

 

[Astra]

Hiya Jess

don't split them but start reducing them by taking one 3mg every other day instead! this is what I did for 2 weeks then stopped, this is a safer way to do it, mark it down on a calendar with a star when to take them so you don't forget!
good luck
xxxx

 

[haakjess]

Thats what I'll do! Thanks.

 

[massa]

I'm on at the moment 10mg weekly of Methorexate, they might increase it now that my joints are so painful...
I have had remicade, but i think its wearing out!!!

I will let my gp know when i go back and see her at the end of the week, how things are going...

Take care
Marie
x

 

[haakjess]

It has been a few days since I wrote and I would like to update for anyone interested. Last Thursday, I met with a rheumatologist and he sat with me for aout 40 minutes. I felt like he really cared. He focused on controlling the pain. He put me on Morphine Sulfate 20 mg and had me continue taking vicodin for breakthrough pain. Before he left the room I asked him what he thought I had going on, he really couldn't tell me. He said, it could be a flare of fibromyalgia or Crohns,he said lets wait and see how you do with the steroid shot his nurse gave me and look at the bloodwork he ordered for me. Well, the steroid shot was miraculous and within the next 12 hrs, it got rid of my joint pain, amazing. I just got the results from the blood tests and they came back normal not suprisingly. It has been a week and a half and my pain is 80 percent better.
On a side note, I tapered myself off of the Entocort (my GI Doc had not told me to do it but I was sick and tired of taking the steroids.) My GI doc took forever getting back with me but his nurse told me that I still have microscopic colitis and he didn't think it was an extraintestinal manifestation of Crohns because that only affects the large joints, where I was having pain in all my joints including my fingers and knuckles. It has been 2 weeks since I toook the final Entocort and I have diahrrea again! I guess it wasn't too smart getting off of the Entocort. I am going to stay off it and see how this goes for a while.
Sorry for the confusing note, I hope I expained it properly. Thanks to all of you who helped me understand and made me feel like I wasn't going crazy. Thank you.

 

[Astra]

Hiya Jess

Yes, that's the only thing isn't it? Entocort for joint pain, come off it, then back to D, you can't win!
hope you're ok?
good luck with new meds
xxxxx

 

[haakjess]

Thanks Astra. I read about your funny visit with the Doctor! A good sense of humor is a must with this disease isn't it?!!
One more thing I forgot to mention. The rheumatologist also put me on sulfasalazine. It's making me a little nauseus but I can deal with that. I am working up to taking 2 pills twice a day.

 

[Astra]

Hiya Jess

how about you try Asacol instead? it's an amnio salicylate like Pentasa especially formulated for UC, but doesn't have sulfa in it.

Yes, it was hilarious, but I still feel wrecked, I can't face him again!
God you gotta laugh!
xxxx

 

[haakjess]

I was on Asacol for years, then my GI doc changed me to Llialda. Then he changed me to Apriso, 3 pills twice a day. So I am taking Azulfidine and Apriso. Are those both 5 ASA's? Maybe I should bring that up to my rheumatologist when I see him. I had no problems with Asacol. I suppose I should write down all my meds! It would take two pages!

 

[Astra]

Hiya Jess

yeah they are all 5 ASAs! Ask about the Asacol cos you've had success in the past with it.

xxxx

 

[haakjess]

Just wanted to post another update. It's been a few weeks since my steroid shot and I am starting to get the pain in my joints and heels again. The rheumatologist put me on sulfasalazine and told me to taper off of the Apriso. I had to bring it to the attention of the Doc that I was already taking a 5 ASA. So, I have been working up to taking 4 of those a day and no more Apriso. That was the instruction from the rheumatologist, now tomorrow I have a meeting with my GI. He didn't think I was experiencing Extra manifestation of Crohns because it affects only the large joints and since my fingers, wrist, and ankles hurt those are considered small I guess. I am also having pain in my heels. It's weird but I did some reading on all auto immune diseases and that is a symptom of Ankylosing spondylitis. I dont know. I am trying to find an answer but I dont want to become crazy and start thinking I have other illnesses when I don't. It's just very frustrsting when my GI doc says its up to the Rheumatologist and the rheum, says its in the GI's field. They keep passing me off to one another and I feel like I am being blown off. I am very close to finding a different GI doc. We'll see how tomorrow goes. Thanks for any input....

 

[haakjess]

Update 3 years later! I started Humira shortly after that last post. After about 3 more months, I got sick to my stomach. I had diahrrea, vomtting, etc. Only lasted a couple days and then poof..magic! My joint pain goes away! I have since had microscopic colitis, which I did entocort for and I think that worked. So, no joint pain up until 2 months ago. It came on the same way as last time except I have numbness in my hands and arms. I had my blood checked by my GI doc and it all came out fine. Ugh! Here we go again. We were wondering if the Humira is still working, but the test found no ANAs so that's a good thing right?!
Of course my GI doc is passing me off to a rheumatologist, the old one turned out to be no help. He never gave me a straight answer so I just stopped seeing him. I have an appointment with a new rheumatologist in two weeks. Lets hope this one has some answers. It seems like textbook Rheumatoid Arthritis but what do I know! Thanks for being here!

 

[plantluvr]

I received the result of my sed rate and that was normal too. My physical therapist said there are things happening in my pancreas. She is not your typical therapist, she practices Manual Therapy. It is amazing what she can do, she can tell where there is trouble in your body. Anyway, I'm wondering if anyone has had any trouble with their pancreas and if it is at all related to autoimmune issues. Thanks again everyone.

hiya. i hope you feel better soon. i have had trouble with pancreatitis. unfortunately its due to crohns meds and some antibiotics. pentasa was the first to cause it. pentasa is asprin based as well as asacol. remicade gave me serum sickness. i think my body thinks everything is foreign and rejects it. i also have osteoarthritis and osteoperosis in my hip and scholiosis. i fin that stretching and walking a few mins a day has worked wonders. also have trained a martial art for 11 yrs which the first form is for healing.wing chun. i notice when im not feeling well i sit and lay around that i hurt much worse.calcium vit d3 and magnesium are essential for healthy bones. som days i have to force myself to move. i hope this helps some. i wish you all the best!

 

[haakjess]

Thank you for the good advice. Sounds like you have had to deal with a lot of pain. I am going to order some magnesium that I used to take. It is called Calm and I used to put a little in a teacup of warm water and drink it before bed. It helped me sleep and also kept away the constipation. I am also taking the calcitonin salmon nasal spray. I take vit D 50k once a week. Thanks for the good wishes and take care too.

 

[haakjess]

This is becoming a little like my own personal journal. Last week Humira sent out a phlebotomist out to my home to draw blood to check for antibodies. ait came back that I am not tolerating Humira, its just not working so my GI doc sent me a letter and told me to stop the Humira and schedule a colonoscopy to reavaluate my colon. If they find inflammation (which they may very well not) then we will talk about different meds. Good news this time is that the GI doc who diagnosed me 9 years ago is with this practice now and he will be the one performing the test. I like this doc. I am hoping for answers. My pain management docs have been helping me through all the crazy joint pain. I got a shot in the bum of methylprednisolone and a 6 day taper pill pack. That shot worked wonderfully but relief only lasted to last day of pill pack. I have a new young rheumatologist who seems interested in helping so even though I am hurting I still am keeping my spirits up because I feel like I finally have a team who gives a hoot. Thanks for listening!

 

[Dexky]

What do you mean Humira sent them to your house??

 

[haakjess]

My GI doc set it up. He said if the Humira stops working, some people get Lupus-like symptoms, so he told me he was going to have a test done to check for ANA antibodies. He mentioned something about all of the test might not be covered by insurance, I might be responsible for up to 250$ max according to our income. He is on a board for Humira too. I am not exactly sure of the details but it happened pretty quickly. A contract phlebotomist came out to my house and drew blood and sent it to a lab. Shortly after, I got a call from my GI office that it was in fact not working and that we needed to schedule another colonoscopy to reevaluate my colon and if there was signs of inflamation that we would discuss alternative treatments.
Anybody else have this done?