I'm at my wits end, your opinions would be much appreciated...

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Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/9/2009 6:59 PM (GMT -6)   
I apoligise in advance for the length of this post!

From Feb 2007, I suddenly began to suffer from bad pain in the base of my back, to the extent I found it almost impossible to walk at times. I had no trauma to the area, and had previously enjoyed good health.
I became ill with bowel problems in Oct 2007, and was eventually diagnosed with Ulcerative Colitis in Nov 2007.
I was close to surgery and really quite ill for a long time, on high dosages of steroids. As soon as I was on the steroids, the back pain disappeared.
I started on azathioprine in Feb/March 2008 and, after around 3 months is started to work.
I came off steroids completely in May 2008.
My bowel is now totally under control, and I'm back to normal, as I was prior to UC.

Within 2 days of finally coming of steroids, I had bad pain in both my shoulders, which has increased and never went away. The back pain came back, though nowhere near as bad, really only being noticeable after driving/sitting for periods of time.
I have a superb relationship with my gastroenterologist, and he referred me to a rheumatologist in Nov 2008.

As soon as I met the rheumatologist, I felt it was not going to be an easy relationship. She has a very heavy German accent, the fact she's German doesn't bother me in the least, it's simply her accent is very difficult to understand. I'm lucky if I can make out 3/4 of what she says.
Also, she is extremely direct and just does not seem to interpret what I am trying to convey or articulate, which is a problem I have never had before.

When I first seen her, she suggested I would probably have to go on Anti-TNF therapy drugs (Infliximab), and that it was likely I had enteropathic arthritis.
She suggested I stop taking the azathiproine, and go onto methotrexate, but she would have to write to my Gastroenterologist first.
She made me another appointment in 6 months (May 2009)

My gastroenterologist replied to my rheumatologist, saying he felt it would be dangerous to take me off Azathiproine and put me on methotrexate, as the Azathioprine was controlling my UC and there was not strong enough evidence that the methotrexate was useful in treating UC.
Basically he felt that would more than likely put me at risk of getting ill again.
He decided to prescribe Sulphasalazine, in the hope it would help my joint pain.

In Dec 2009 my original rheumatologist made an appointment with another Doctor, who is involved in prescribing Anti-TNF drugs, and he examined me and pretty much agreed that I would probably have to go on Anti-TNF in the future. He said he didn't need to see me again, and to keep my appointment with my own rheumatologist. He also suggested I could try azathioprine and methotrexate together. He told me if the sulphasalazine hadn't worked after 3 months, it never would. He also arranged physio for me (which hasn't made any difference yet).

Around that time, my back pain became very bad, I had problems walking again, and it was becoming very frustrating. My shoulders, whilst gradually getting worse, were now at a point when putting on a jacket was almost impossible.

My gastroenterologist appointment then came up (January 2009) and I told him how I was. He was not happy, and wrote to my rheumatologist, asking for my appointment to be brought forward and that I should be considered for Anti-TNF.

This brings us up to Tuesday (Feb 3rd 2009), when my rheumatologist brought my appointment forward, as requested by my gastroenterologist.
My wife came with me, and neither of us even recognised my name being called, such is the rheumatologist's accent.

When we went in to the appointment, I immediately felt very rushed. She asked me how I was, and I told her how my back was much worse, and my shoulders were the same.
I also told her it was beginning to really effect me emotionally (which is certainly is) and I was worrying I may lose my job because of the difficulty associated with my joints (I'm in the police and have been on light duties for several months now).

She openly said Anti-TNF is very expensive and she couldn't justify giving to to me. That really confused me as it was totally the opposite of what she had said in our first appointment.
I also told her I was concerned in case I had ankylosing spondylitis, or other arthritis of the spine, given the length of my problems with my back, and my Inflammatory Bowel Disease being an increased risk factor.
She didn't really answer that at all, and just said "Well we'll see".
She told me to give the sulphasalazine another 3 months and to come back in May. I also got steroid injections in my shoulders, but they've not worked at all.
I mentioned a scan , as I've read that is far better at diagnosing arhtritis/spondylitis, than x-rays, but she mentioned the cost factor again.

That was it. I was there about 10 minutes and packed off.

I am now totally fed up. I may be going to lose my job, I can't even play with my kids, I have no idea what I actually have, or what's going to happen. I feel like I'm cracking up. I'm 34, married with 3 kids, and no idea what's going to happen with my life: is this how I'm going to be, permanently in pain, with arthritis, out of the job I love?

I emailed the Patient Association, and they suggested going to my GP and seeing if I can get another consultant. I truly feel I can't relate to this rheumatologist, and I can't understand what she says.

I have no problems with the many other medical professionals I regularly deal with, on the contrary, I enjoy a very good relationship with my gastroenterologist, and am as far from being 'difficult' to deal with as you could imagine.

I'm sorry for the long winded rant, but I'm at my wits end. Any advice/opinions would be gratefully received.

Thanks.
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC).
150mg Azathioprine/Imuran.


Scarlet504
Regular Member


Date Joined Oct 2008
Total Posts : 192
   Posted 2/9/2009 7:19 PM (GMT -6)   
Hi,

I am so sorry that you are in such pain and misery, but unfortunately I know nothing about your condition and all I can do is offer you support and understanding.

It is probably the best idea to change doctors. I know the feeling hanging onto a doc that you really don't like and that doesn't contribute much to you than looking for another one, but obviously she is not helping you and even contradicting herself. It also seems like your rheumatologist and your GI are on a kind of power play and everyone wants to be right. Well, it affects you and not in a good way. You are the patient and need the help. You are in pain - not them.

I hope you soon get a decent treatment that works and that someone takes care of you, your problems and your worries.

I am truly sorry for you and I wish you all the best and keep us posted!
Scarlett, 38 yo., TX
Pancolitis since 3/1997
Meds
6 x Asacol a day
75 50 mg 6-MP
Align (probiotic)
Flintstones Complete Vitamins


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 2/9/2009 7:21 PM (GMT -6)   
Thank you for that, I appreciate your words:-)
Diagnosed Indeterminate Colitis 25/11/2007 (update: told by consultant 15/01/08 in his opinion definitely UC).
150mg Azathioprine/Imuran.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/9/2009 7:49 PM (GMT -6)   
Some doctors are just not very nurturing. I think some people are less thoughtful and informed about their problems and options, and want an authoritative figure in their doctor like your German doc, who just tells them what to do. But you need something different. I hope you can find it.

Wondering, how do you know it is arthritis? Have you had an MRI?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/9/2009 8:35 PM (GMT -6)   
Hang in there...I agree with what's been said above, by all means find a new doc if you can.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 2/9/2009 9:53 PM (GMT -6)   
If the doc you are seeing is refusing to be of help, change docs.
21 yr/old Uni student. Vancouver, BC
Imuran 150 mgs/day

Prednisone 7.5 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag, CoQ10, L-glutamine and Iron supps. Also now trying probiotics Bio-K (acidophilus)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/9/2009 10:19 PM (GMT -6)   
Cammy, I don't remember how long you were on steroids, but I seem to recall it was a fairly long time. You really should be checked for avascular necrosis (osteonecrosis), a degenerative condition that develops in the ends of long bones and can be caused by steroids. Shoulders, hips and knees are most commonly affected.

I had AVN in my right shoulder, and I can tell you it was the most painful thing I've ever had. Much more painful than walking on two broken bones in my left leg. They usually need MRI's to diagnose it.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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