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10-09-2013, 09:21 AM   #31
valleysangel92
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So much for rapid access! I just got a letter through, waiting time is 26 weeks, might be more if I request a specific hospital ( which I might have to since some of the hospitals in my health board are pretty much impossible to get to without my Dad taking time off work to drive me) .

I'm going to have to go back to my regular doctor to see what she says. I can't be like this for six months .
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin

Last edited by valleysangel92; 10-09-2013 at 04:11 PM.
10-09-2013, 04:53 PM   #32
Jennifer
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There's no way to leave your GI a message? I know mine has an emergency line but they do have a messaging service and you can leave a message with the front desk to give to the GI.

6 months is a long time. I hope you can get in sooner and hope that the closer ones to you are the better doctors.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
10-09-2013, 05:13 PM   #33
valleysangel92
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I can call and speak to his Secretary but they didn't like that the last time I did it, she got pretty brisk about it. plus each time I tell my GI about my joints he just says wait for the others.

Thanks Jennifer, six months is ridiculous even for the nhs. I'm hoping that my GP will be able to get things moving faster. things are just getting worse every day .
10-10-2013, 09:40 AM   #34
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I just got back from the doctors, she is going to write to the rheumatologist but they have no idea how long it might be before I will hear back.. So playing a waiting game now.

My bloods showed low ferritin and since I can't tolerate the prescription iron tablets she wants me to try multivitamins with iron in them and then retest in 3 months. If my iron is not improving then they will have to think about an infusion.

The pain in my hips is worse again today, nothing is helping, but they can't/won't give me anything other than paracetamol, so I guess it's time to suck it up for a few months .
10-10-2013, 02:25 PM   #35
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I'm sorry. D: I hope you hear back from them soon.

My GIs (current one and in the past) would never prescribe pain meds and neither does my Rheumy. My GP will prescribe Tylenol 3 but if I needed anything stronger then I'd have to go to pain management for it. Do they have pain management in the UK?
10-10-2013, 02:34 PM   #36
valleysangel92
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Normally my GP will prescribe pain meds, I think this time she just doesn't know what to give since normally they would give NSAIDs until you see the rheumatologist and then they would prescribe something else.

We do have pain management, but they aren't very keen to refer there until they have exhausted other options, in the past I have had Doctors which have been very happy to just leave me things that cover up the symptoms and I think my current doctors are afraid of that happening again.. Like if I go to the rheumatologist with the pain well controlled they might not see the full extent of the condition.

Here pain management specialists seem to be more for people who are in chronic pain that can't be treated or for palliative care. So it might be an option if the rheumatologist draws a blank and they can't suggest anything.

Thankyou so much for all of your support on this . This site is amazing !
10-10-2013, 02:55 PM   #37
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I saw on your profile that you have been on steroids in the past, but stopped them in Feb and May. I am assuming that this was for the Crohns? I am wondering (BIG TIME!), if your joint pain was relieved when you were on them? (I am only asking because I have a mixed connective tissue disease, and prednisone is commonly used.) I hope that the letter your doctor is writing helps you get in to see the rheumatologist.) I can't believe that they are letting you suffer like this!
10-10-2013, 05:31 PM   #38
valleysangel92
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I saw on your profile that you have been on steroids in the past, but stopped them in Feb and May. I am assuming that this was for the Crohns? I am wondering (BIG TIME!), if your joint pain was relieved when you were on them? (I am only asking because I have a mixed connective tissue disease, and prednisone is commonly used.) I hope that the letter your doctor is writing helps you get in to see the rheumatologist.) I can't believe that they are letting you suffer like this!
Yes my shoulders and hips especially seemed to do better on the prednisilone, it seemed to get a bit worse again once I was just on the entocort.

This is the problem with the NHS... The waiting times are a nightmare and in the meantime people are supposed to just get on with it. They sometimes seem to forget that this is our lives... I'm not allowed to even look for work until this is sorted, and I want to go back to uni, I have to apply by January but there won't be a point if I don't hear back by then. . Ahhh!

Thankyou for your support!
11-06-2013, 07:59 AM   #39
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A little update... No word from rheumatology... Still signed off work.

The pain in my hips is getting progressivly worse, walking is becoming very hard and it had me in tears yesterday (and I hardly ever cry) , so I gave up and I've just left a message with the IBD nurse, hoping they will have a way to help me with my mobility while I wait for the consultants to pull their fingers out and do something useful.
11-06-2013, 09:21 AM   #40
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I am so sorry for you, but also a bit baffled. I know your country's health system is run differently, and I know that rheumatologists are hard to come by, BUT... you are a YOUNG, smart, spunky girl, with a potentially great future! (which is on hold!) I would think that the doctors that you do see, would try to move mountains for you to be seen! Sure, most specialists have waiting lists, but they usually have certain slots/times for people who are suffering terribly and need attention now!

If I were you, or your mom, I would first of all, want confirmation that your doctor did send that letter- that was almost a month ago! And yikes..... I WOULD probably go ahead and call the GI's doctor's secretary too, whether she had a tone or not! Does your GP know that you are continuing to go downhill?

I am sorry, valleysangel- I am just discouraged for you! I want you to get the treatment you need to enable you to get out in the world and do your thing! I am sending you best wishes and lots of prayers!
11-06-2013, 09:35 AM   #41
valleysangel92
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Thankyou fozheart! I agree, this health system is both amazing and terrible at the same time... The saddest bit is that I was actually training to be a nurse before all this kicked off, and would so love to get back to that, but the longer I wait the less of a chance that can happen.

My GP does know that things are still getting worse.. But she says that she can't do much more and it's up to the hospital, unfortunately, the hospital consultants here don't really seem to pay much due to what the GPs say, even if a patient is struggling.

If they would listen I'd have my dad or my uncle call, my uncle is in charge of a huge team which is part of care in the community and occupational health, he tells consultants how to do their jobs... But as soon as you hit 16 they refuse to listen to anyone except you unless your unable to talk.

I'll see what the IBD nurse says when she calls back, my next step is the GIs Secretary if nothing happens, if I knew what rheumatologist I was going to be under I'd be calling them.

Oh and I was due for endocrinology last month too.. And guess what.. No appointment.. Gahh.

Thankyou so much for your support and prayers, it means so much!
11-08-2013, 03:07 AM   #42
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No word from the IBD nurse yet valleysangel92? I'm sorry that the pain is getting worse. *HUGS*
11-08-2013, 03:19 AM   #43
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I was just about to update, didn't get a chance yesterday as things were a little crazy at home.

She called me and said that it's not her area and she can't do much, keep taking the paracetamol.. She said that I can have something stronger from the GP but when I said that my GP doesn't seem to want to give me anything else she said she'll speak to my surgeon (because he was my last point of contact) and see what he can suggest.

She also told me to phone the booking centre, which I did yesterday, and they told me that it's going to be at least the end of January / start of February.

Thankyou so much for your support .
11-26-2013, 03:01 PM   #44
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Just a little update.. I'm sort of using this to keep a track for myself as well as anything else..
The IBD nurse never called back with any advice from anyone, so that was useless.

I'm still having a lot of problems with joint issues, my knees have been particularly bad the last few weeks, very sore, stiff and puffy, definitely something not right. Just hope that I don't end up having a sudden reprieve when it's time to see the rheumy. At the moment just getting by with heat packs and what pain killers I can manage to get otc.

Still not able to work or really do much of anything, which is some what frustrating, but I know there are others dealing with much worse. Thankyou everyone for all of your support.
11-26-2013, 04:16 PM   #45
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Can you call the IBD nurse back and bug her about it? She may have forgotten. Any chance you can talk to your GI rather than the nurse?

Keep taking photos of any visible swelling in case its all better by the time you can be seen. I'm sorry you're still in pain.

11-26-2013, 04:21 PM   #46
valleysangel92
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The first time I phoned she said it's not really her area so she said she'd see what she could find out but couldn't really do much.. I can call the GIs Secretary but he works at 3 different hospitals, so tracking him personally isn't so easy, generally patients can only speak to them over the phone in emergencies. Other wise you have to wait until you see them. (kind of silly I know)
I'll be having to see someone or phone the IBD nurse again soon anyway, because the crohns seems to be flaring again.

Thankyou



11-26-2013, 10:44 PM   #47
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Wait... GI at the end of January? Has your GP heard back from the rheumy, with that appointment yet?
11-27-2013, 03:00 AM   #48
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The rheumy is supposed to be the end of January/beginning of February, but that's not a solid appointment yet, it's just what the people in the booking centre have been able to tell me. The GP did send a letter trying to speed things up, but it doesn't seem to have made much of a difference.

Although I'm not actually due to see my GI until around February (I saw him last in August) I'm trying to get in soon due to current crohns symptoms.
11-27-2013, 03:22 AM   #49
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I hope you can at least get in sooner to see your GI. Its a very real possibility that your joint pain is connected to a Crohn's flare. The first thing my Rheumy did was try to treat my Crohn's because he felt it was the main cause and he was right. My extreme joint pain was my first symptom to my current flare. Now that its just about under control (wont know for sure until I'm off the Entocort), my joint pain is mostly gone and when I do have pain its nowhere near as bad.

Thank you for keeping us posted.
11-29-2013, 08:56 PM   #50
valleysangel92
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It looks like I should be hearing from my IBD team sometime soon, I went to the doctors yesterday (Thursday) and they called the nurse asking for advice, have a 10 day pred course.. Then when I got home my GP called and said the hospital had called him back and my consultant had requested some bloods (which I had today) and they were sending me a stool sample form ready for a clinic appointment. Fingers crossed!
11-29-2013, 10:13 PM   #51
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Yay! I'm happy for you!
11-29-2013, 10:17 PM   #52
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Thankyou don't think I've ever actually been so happy to have bloods taken as I was today :P. I'm easily pleased haha.
11-30-2013, 09:03 AM   #53
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Ahh... a sigh of relief for you, and hoping that they will get results quick and make a decision! Wouldn't it be something if you were feeling better for the holiday?! At least enough to get out a bit and have a little fun! I am wondering how much prednisone they put you on this time, and if it is making a difference? Hope so.
11-30-2013, 11:51 AM   #54
valleysangel92
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Thankyou I am hoping so too.. I'm on 6 x 5 mg for 10 days, then taper one a day, so ends up 15 days in total... At the moment they are basically just keeping me up all night, I was having d but they seem to have settled that, and my joints do seem to be at least a bit better, they aren't so painful and swollen, so a positive sign I think .
12-02-2013, 08:24 AM   #55
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Ok, so I just got 2 letters in the post... One saying they are cancelling an appointment on the 30 th of December, the other saying I have an appointment on the 13th of January.... This is for my GI.. I'm not very impressed tbh....
12-02-2013, 03:20 PM   #56
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Sometimes emergencies can push back appointments. I'm sorry you have a longer wait now though.
12-02-2013, 03:30 PM   #57
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The letters were both dated the same day , but I've not had the original letter telling me about the appointment on the 30 th, so I think they must all of been sent at the same time and those two got here first (our postal system doesn't make sense) I don't mind that the one on the 30 th got cancelled, I wouldn't of been able to make it anyway ( I'm being taken away for New years) it just gets a little puzzling when you get the cancellation letter and the rebook but not the original appointment . Generally around that time you would see the consultants registra not the consultant themselves, so this at least gives me a better chance of seeing my GI personally ( he doesn't like his patients Palmed off on others when they are struggling).
01-14-2014, 02:00 PM   #58
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I thought it might be about time I updated this. GI appointment got me no where, and he says he doesn't know what to suggest other than to wait for rheumatology.

I haven't yet heard anything from rheumatology, and my uncle (an occupational therapist incharge of a huge team of medics) says I'll be lucky to get one within 6 months of my referral time, so that would mean id be lucky to get one by March.. Could be up to April or even may if past experience is anything to go by

As far as the joint pain goes, it temporarily eased a little after a course of steroids but now it is very much making its presence felt, my shoulders, back, hips and knees are especially painful, and it is disrupting my sleep, management wise I have a small amount of cocodamol to use when things are very bad, but getting that was like getting blood out of a stone. So I'm having as many hot baths as I can and I'm using heat pads and wheat packs as if they are going out of fashion.
01-14-2014, 05:31 PM   #59
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When I saw my Rheumatologist he did do some tests to check for RA and AS but his main goal was to get my Crohn's under control. I didn't have a lot of symptoms at the time but when I was started on Humira, all of my symptoms went away (wish I could have stayed on it). Once my GI realized what was going on he got more involved. Did your GI felt that it was possible that your joint pain could be related to Crohn's?
01-14-2014, 05:36 PM   #60
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My GI didn't even seem to be sure that I have crohns "/ . I don't know why, but apparently there's some doubt, even though I've been told previously it was definitely crohns.. So I don't know how it will be approached now.. I know that after my surgery, a sample of the removed tissue was sent away for pathology and a leading professor in ibd said they recognised signs of crohns and also of damage from anti-inflammatorys which were used to treat joint pain I had as a teenager. So my GI stumped me.

Before that, it was always stated as a possiblity that the joint pain was more than likely related to the crohns in some way , even if they flared independently of each other.
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