Just a general gripe as I am feeling down today anyways...

Apparently the inflammation in my body is spreading - went to the doc yesterday as I have had an upset stomach for over a week now. She things my reflux is really flared up and that I might have torn a small hole in my stomach with the Alleve I have been taking for my foot, jaw and hip. So she gave me 30 days worth of Nexium and 10 days of Carafate to help heal my tummy. Thanks to UHC deciding I don't really require something as expensive as Nexium I have had a hard time controlling my reflux as none of the other available (and covered) meds work nearly as well as the purple pill did.

So now its plantar faciitis, bursitis, gastritis and TMJ-itis. This gastritis really makes me feel like hell too. I can't really eat because of the nausea and yet if I don't eat the nausea gets worse. Hmmm - de-ja-vu....I just want to go home and hide in bed. Everything hurts today.

OK - enough feeling sorry for myself for now. Thanks for listening.

Sounds like me before I was put on Enbrel, then Humira (except I did not have the pleasure of the gastritis and GERD). So, I know the feeling. You keep trying to think you are tougher than it is and if you just suck it up, things will work out. At some point, you realize you are not as tough as you'd like to be. Then it is time for a nap.

Even with my Humira, I have something going on all the time. For the last month, the winning joint has been my shoulder. I just emailed my rheumy asking to get in earlier than my scheduled appointment next month....

Sorry about your pain and nausea. Have you ever been referred to a rheumatologist?

Jan

I went to a rheumy probably about 6 years ago (before my UC flared) for all over joint pain. I would get these crippling days where every joint down to my toes would hurt and nothing would help (except a hot bath). They were thinking RA, but I tested negative for it. Once I was diagnosed with UC I attributed the pain to that and since my colectomy I haven't experienced this type of pain on this scale again. Just the "itis's" and occasional all over stiffness.

I guess I just hate walking into a doctors office saying "hey I think I have this...". It makes me think they will think that I want to be sick or something.

I need to change my primary doc as my current one just isn't working for me anymore. She always seems afraid of my body and what it will do anymore. It is so hard to find a doctor that looks at you and your body as a whole and not just a foot, hip or stomach. The doc who I saw yesterday wasn't my usual doc (she wasn't available as usual) and I was told if my stomach doesn't significantly improve within 5-6 days I need to go back to my GI. I haven't seen Dr. Butt (my name for him ) in three years now I think. Hmmm, guess I will have to call him Dr. Gut now.

Hi Tricia,

I'm really sorry you are feeling a little below par (is that an understatement?).

I don't have any words of wisdom, just wanted to send my best wishes for an early reprieve from all of this. I know what it's like to have so many things going on at once that you barely know which one is causing the most grief.

Hope you feel better soon.

Take care.

Shell

Trish, I know what you mean. I especially feel sensitive to it, because they know I am a nurse and I don't want to come off sounding like I am trying to do their job for them. So, I consequently wind up sucking it up for weeks or months before finally contacting one of them about it. Luckily, Kaiser encourages email contact with the doctors, so I can just lay out my symptoms, what helps, what doesn't, etc. Then I usually ask, could this be such and such? I definitely had to go the route of the tunnel vision docs (orthopedic surgeon, podiatrist, GI) before my primary referred me to rheumatology. And of course, testing negative for RA is pretty meaningless, except to rule out RA.

Jan

I think I am going to make an appointment with Suzan's GP. She is in the same practice as mine. I have been trying to switch to her for awhile now, but it hasn't happened yet. She looks at you as a person and not a symptom and she spends time with you. She sees half the number of patients the other docs see in the office. I saw her once for a TMJ flare and she asked me about stiffness and joint pain and made me aware of IBD related arthritis so I know she is open to the idea.

Well I made an appt with Dr Gutt yesterday. The nausea got so bad I had to have the doc call me in some phenergen. I sat with my head over a bucket all morning. Being off my anti-inflamatories all week sure has got me feeling stiff all over. I wonder what my GI would say about all this? Appointment isn't until the 26th so I will have to hang in there . I know he is going to want to scope my gut. It has been 6 years since he has seen it. Oh joy!

Doesn't sound fun. Seems that you are between a rock and a hard place. That was what got me on Enbrel, then Humira...no NSAIDs for a year! I was moving very slow.

Jan

I threw in the towel today, Jan and made an appointment to see Suzan's doctor. I had my physical therapy recheck today. After 8 visits with 5 iontophresis treatments my foot is no better - matter of fact it is slowly worsening. With the latest winter storm the past few days I ache so bad I could cry. I just want to curl up in my heated bed and let the heat soothe my aching body. I am looking at my bottle of Aleeve longingly. I know it would at least relieve some of my pain, but who knows what it would do to my stomach. My appointment is for the 29th. I want to go in to this prepared with questions/information to make this visit a good one. Any suggestions?

A good start would be to try to chronicle your symptoms: when they started, where the pain is, what the pain is like, how it varies over the day, etc.

Make it clear that you have been doing some reading and talking with other IBD patients with arthritis and you are becoming convinced of the connection between your symptoms. You may want to suggest if you should have x-rays of your SI joints done for the doc to see. The GP probably would not be able to see the early changes of sacroiliitis, but it will be good to have for your rheumy referral.

Jan

Saw the doc today and had a nice talk with her. For once I was actually having symptoms when I finally got to see a doctor. Pain started in my hip as usual and had spread to that all over ache. She definitely agrees that there is some sort of body wide inflammation going on. She said it could be IBD related or something like Fibromyalgia. I told her about my stomach issues with OTC anti-inflamatories (Motrin,Alleve)and she wants me to take Celebrex twice a day for a week and then once a day for a week. I am to continue until I am feeling better and then discontinue it. She also wants me to stop taking Ultram for pain and try Lyrica instead. She gave me 75mg samples to take twice a day for a week and then I can try three times a day if I need it. She told me it has shown to be effective treating Fibromyalgia and inflammatory conditions in higher doses. I am to go back at the end of March for a follow up with her. I feel I have made some progress at least. Finally someone who will look at my body as a whole and not just parts and pieces. I guess now we just wait and see what the meds do.

Oh yeah she also suggested massage therapy. Hmmm now if I can only figure out how to get UHC to cover that....

Hi Tricia,

I really do feel for you. I was diagnosed with Fibromyalgia a few years after I my j-pouch surgery. It can absolutely floor me when it's in full flare and everything hurts from my hands and feet to every joint in my body. Even my buttocks ache! I was prescribed Amitriptyline and whatever pain meds work for me at the time. I can't take NSAIDs either so it's very difficult to get the pain under control when I'm in a flare.

However, as a strange coincidence I discovered that when I was taking VSL#3 before I had my j-pouch removed that I didn't have any problems with the Fibromyalgia. If for any reason I had a break in taking it (usually if I couldn't get it shipped over from Oxford before I ran out) then along with the pouchitis returning so would the Fibromyalgia. I thought it was just a coincidence but having done some research on the net I noted that IBD and digestive disorders were a of the common factor with Fibromyalgia.

Unfortunately once I had my j-pouch removed I no longer qualified for VSL so I started taking an OTC multibiotic. Although I still do get the odd flare it's not been anywhere near as sever as if I didn't take anything.

I don't think it's the placibo effect either because I had never made the connection between the two until I discovered this side effect for myself. I mentoned this to a friend of mine who also suffers from Fibromyalgia and so she started taking the same probiotic as me and says that her flares are a lot less severe since taking it.

I do hope your new regime of meds start to give you some relief soon but it wouldn't hurt to try the probiotics as well if you're not already taking some.

Good luck and take care.

Shell

A year or so ago I mentioned to my rheumy that some days I feel like I have fibromyalgia because I ache so much. She said that with AS, there is a fibromyalgia-type component. I have had good luck with Mobic (meloxicam), which is a first generation COX-2 inhibitor. Not as selective as Celebrex, but it's available in generic. If this does turn out to be AS, note that a recent study showed that staying on your NSAID continuously worked better at controlling symptoms than using it cyclically. I am not pain free, ever, but I am functional, so that's good enough for me.

Hope this works for you, Trish. I know that half the battle was finding a doctor to figure it out.

Jan

So far so good. The last couple of days I have felt pretty good. Hip pain is decreased but not gone and everything else feels normal again. So far my stomach is tolerating the Celebrex twice a day. I hope it will help reduce the bursitis inflammation in my hip. I guess time will tell if I am just having a good week or if the meds are truly helping.

Question for Jan here. I used to take Flora-Q as a probiotic, but stopped as I didn't see the real need to continue. I don't have a pouch and my small intestine works fine. Now that I am looking at possible IBD related arthritis or some sort of inflammatory condition is there any reason to start a probiotic up again? Is there research that says this is a good thing and it could help my joints?