06-25-2010, 03:37 PM   #1
pompeybird
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Hey there

I did post this but for some reason i cant find it now (head is all over the place no sleep etc lol so i apologise)

I thought it might be best in here

Hey there

Im pompeybird aka Char , im 28 and live in portsmouth with my partner of nearly 12 years and my 2 sons aged nearly 10 and 7

I have been ill for around a year and after many many tests it was found i have osteoperosis , arthritis , ankylosis spondalitis , B12 deficancy and extreme weight loss
I have been under so many specialists i didnt know weather i was coming or going as they have all been trying to find the cause of all these problems and after throwing up for near on 3 months solid and barely abled to get out of bed i was referred for a colonoscopy and gastro oscopy and an in depth scan (after my GP told me it was all in my head and i was anorexic)

Yesterday i was FINALLY given an answer it has all been cause by chrons !!!
On a scale of 1 - 10 im a 4 to 5
I dont get diorreah or stomach cramps but have had bad bouts of vomiting
My chrons is where my B12 would normally be absorbed hence being B12 deficant

The problem is they cant treat me with what they would normally prescribe as it could make the other problems i have worse mainly the osteoperosis
Im in agony 24/7 due to the ankylosis spondalitis but cant have anything for it as it could make the chrons worse so i have been given Budesonide for now

My main concern is trying to gain weight as im 5ft 4 and weight 6 stone 2 , the specialist who diagnosed me is suggesting i go into hospital for a couple of weeks to be fed through a tube so im getting food 24 /7 im not keen so he wants me to go back in 3 months to see if i have put any weight on

He has reffered me to a dietican and a rhumetoligist which is going to take a few weeks to come through

Im not sure what the next step is to be honest my head is all over the place , i thought i would of been pleased to finally have an answer and whilst i suspected it was chrons and was ok with that i feel strangely deflated and out of my depth as im not sure what happens next

All i know is i have to put weight on in 3 months and i just dont know where to start with it as no matter what i eat i cant put the weight on

Anyway im so sorry for the long post just i was only diagnosed yesterday and heads a still bit all over the place

Will look forward to chatting to you all
06-25-2010, 04:14 PM   #2
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Hi Char and welcome. I did a brief search on ankylosis spondalitis and one of the treatments shown for it is Remicade which is also used for crohns. I don't know its effect on the osteo but it seems that with everything going on getting crohns under control would be number one. I know prednisone would be hard on your osteo but you can't improve if you are unable to absorb nutrition. Has a short course of pred been mentioned just to beat down the crohns symptoms?
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06-25-2010, 04:22 PM   #3
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Thanks for the reply Dexky

Nothing much has been said at all apart from the Gastro specialist wants to see me in 3 months , he has referred me to a dietican and rhumotologist (sorry about spellings)

He has put me on Budesonide which he says is a mild steroid that does not get absorbed into the body so should be safe with the osteo

To be honest i dont suffer with pain as such with the chrons im more in pain with the ankylosis spondalitis

Im due to see my GP next week although that was an appt i had made myself before being diagnosed

I feel at a bit of a loss as im not sure what the next step is , my main worry is trying to put weight on

I thought i would be pleased at finally getting a diagnoses and a reason for all the other problems (although i know chrons isnt the best thing to have) but i just feel at a loss as i dont know what the next step is

I hope that made sense lol
06-25-2010, 04:32 PM   #4
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I just meant that if the crohn's and the AS could be treated with the same meds you'd get the benefit of reducing the pain and getting the crohn's under control might allow you to gain weight.

Char, make sure you start listing any questions you may have so you won't forget to ask when you see the GI.

Some of the more experienced people will have better advice for you, make sure you write down questions as they arise.
06-25-2010, 04:44 PM   #5
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Thank you so much its actually a huge releif to find people that are in the same boat
Writing it all down i think is a great idea especially as my head is like a marshmellow at the moment lol

Im not looking forward to seeing the doctor next week as its the same guy that sat there and told me it was all in my head and i was anorexic (despite the fact i was vomiting blood)

Im actually really scared he is going to sit there and say that this is all my fault and i have done it to myself

Head is all over the place at the minute , there is so much to take in and to read up on and i just cant focus at all
06-26-2010, 03:15 AM   #6
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Hi Char and

When I first read your post and your comment about the GP thinking you had anorexia, I was thinking, hmmmmmm.........what's he going to say when you go back with your diagnosis. Your next post answered that question, any chance you can find a new one?

I don't know much about the meds so unfortunately I can't help there. I guess until the cause of the malabsorption is brought under control it will be difficult for you to gain significant amounts of weight. At least seeing a dietician will help with the issue of osteoporosis and hopefully will have ideas to help reduce inflammation in your bowel. Can you have this appointment brought forward particularly in view of the current situation, maybe ask your specialist to mark it as urgent?

In the meantime browse the food and diet thread, heaps of excellent information there.

No doubt some far more knowledgeable people than me will chime soon.

Take care,
Dusty
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06-26-2010, 08:02 AM   #7
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Thanks for the reply DustyKat ,
With regards to changing GP's im thinking this would be a nightmare as the surgery im at know all my history etc

All the other GP's are brilliant there except for this one guy (who happens to run the surgery) he took me off ALL medication for the ank spon even took me off my protein shakes which is when my weight dropped drastically (i was on 5 protein shakes a day)

When i first started vomiting he diagnosed Gastritis over the phone and put me on anti sickness drugs which didnt help , it got to the point where my mum rushed me to hospital when my GP heard about this he went mad and said i was only to see him and no one else !!!!

After 3 months of vomiting (to the point i was vomiting blood) , having severe blurred vision , weight dropping to 5 and a half stone he begrudgenly reffered me for a colonoscopy and gastroscopy whilst sat there saying i was anorexic and it was all in my head and i was sub conciously making myself sick , it actually got to a point where i wondered if it was all in my head

My partner called the surgery a couple of weeks back for an appt to see if i could get some pain killers by seeing a GP as i can barely walk due to pain and it said on their computer im only allowed to see this one doctor !!!!

So im going on wednesday and if he is still the same now i have been diagnosed im going to be tempted to tell him where he can shove his surgery

This is the same doctor who said a friend of mine had Gastrointeritis that night she collapsed in agony was rushed to hospital turned out she had an abcess on her ovary which had burst
06-26-2010, 08:19 AM   #8
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Hi Char
and welcome fellow Brit

Sorry you're a Crohnie, but at least you can start dealing with this now.
Firstly, do not take any NSAIDS! these are Ibuprofen, Advil, these are the most common for AS, but you can't take them, an alternative is Celebrex this is a COX-2 inhibitor, a kind of NSAID but ok for your gut.
Also sulfasalazine, and mesalazine these are amnio salicylate ie Pentasa, Asacol, which are good for swelling in joints but also for lesions in IBD, I take Pentasa 4 times a day as my maintenance drug, its a prophylactic, a preventative, for future flares.
Methotrexate is used for treating arthritis, and when used for AS, it's given in lower doses.
and lastly, the biologics, TNF inhibitors, these have had remarkable results in treating arthritis, RA and AS, as well as Crohns and UC, these are Humira, Infliximab(Remicade) and Cimzia
all of the above are common meds for us Crohnies, so you have some ammo now to discuss with your doc,
glad you found us, lots of support and friends here for you
any questions, fire away
lotsa luv
Joan xxx
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06-26-2010, 08:33 AM   #9
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Joan that is great thank you so much !!!!
i have seen Remicade mentioned a lot and a friend also told me about this as she had a friend who has chrons and aparently it did really help her gain weight etc , would this affect the osteoperosis at all ?? as i think thats the specialists main concern that what he prescribes for the chrons will make the osteoperosis worse

Its interesting what you say about ibuprofen as i used to take it a while back but got horrendus stomach cramps so stopped taking it (obv know the reason why now lol )

Also its interesting about the other NSAIDs as i have been on Narpoxen for years which is an NSAID

The strange thing is im not in any pain with the chrons its everything else that is causing pain , although im extremly tired all the time , suffer with horrible headaches and feel sick a lot which i thought was down to other things .......... obv not

It is nice to get answers after being ill for so long and having more tests than a science experiment i just want to know what the next step is apart from what i have said with regards to medication , tackling weight etc

I feel like im in a mine feild lol
06-26-2010, 11:27 AM   #10
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Hiya Charl

shame you can't try Prednisolone, this would help you gain that much needed weight, and gives you tons of energy too! but long term it plays havoc with your bones, as in calcium, but I believe it would reduce your AS symptoms and pain, bit of a Catch 22 there! no harm in enquiring tho! for a short course.
don't know how the biologics would interfere with your osteo, I thought that maybe they wouldn't? there is a thread called the Remicade Club on here, check it out, someone might know
xxx
06-26-2010, 12:22 PM   #11
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Thank you Astra thats really good to know
Its funny as when i was diagnosed with AS the lady said they were not really worried about the osteo even though its quite bad for someone my age she said they are treating that secondry to the AS but the GI has said he is worried about treating the CD because of the osteo , it feels like im on a never ending roundabout

Im hoping i will get more answers from my GP (although i wont hold my breath)

Does anyone know how i would go about trying Remicade as in who i need to speak to as im not due to see my GI for another 3 months

Sorry for all the questions this is all so new to me just seems when i come to terms with one condition another arises with a new set of problems lol

Thank you all so much for your help it does feel like a weight has been lifted as before this place i had no direct contact with anyone else who has CD (not enough to ask questions and advice anyway)
06-26-2010, 01:48 PM   #12
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Hiya charl

from experience I don't think your GP will have much say in this, your gastro will have to have it approved, from the big wigs above!
I've thought about Remi too, but cos it's infusions in hospital every 6 weeks, I looked at Humira, which is the same, but self administered using a pen/needle at home.
xxx
06-26-2010, 01:58 PM   #13
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Im not keen on infusions to be honest (although im not sure what that is but it sounds scary ) and want to avoid hospitals as much as poss (although i know its sometime going to be unavoidable)

Im assuming that when i go back to the GI in 3 months the ball will start rolling with regards to meds ?

Im really not sure what happens now
06-26-2010, 02:33 PM   #14
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Would love people to not just see me as a walking illness / disease , im more than that

Yes you are Char!! You are a beautiful mother of two beautiful sons. 3 months sure seems like a long time to wait. I hope things settle down for you so it won't be an unbearable wait.

I'm a little curious why the gp told you to stop the protein shakes? and then threaten you with an ng tube if you don't gain weight? Are the protein shakes supposed to interfere with the AS somehow? This just doesn't make sense to me.
06-26-2010, 02:46 PM   #15
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Thank you Dexky just wish some people could see past the illnesses sometimes as it seems thats all the conversations ever seem to be

My GP baffles me and even my mum ended up losing her cool with him
He took me off everything because i was vomiting so much (which to a point i can understand) but the vomiting stopped after 3 months and he still wont prescribe me pain killers for the AS or anything else for that matter

He still thinks its all in my head as far as im aware (ha ha untill i go see him next week)

Its not him that wants me in hospital in fact he told me i should get over it and get on with it (pretty hard to do when you are vomiting constantly) and to drink more fluids as i was dehydrated (who wouldnt be when you cant keep anything down) its my GI who wants me in hospital on a tube which i will be willing to do IF once the right course of meds is sorted do not help with putting weight on

Its going to be very interesting when i go to see the GP next week as im thinking he cant sit there and say its all in my head now (although nothing would supprise me with him)

Im not sure if when i go and see the GI in the 3 months weather he will start me on other meds , as im not sure what the next course of action is with regards to him

The problem is im under so many different specialists (under 3 different hospitals) it seems sometimes as if its a case of the left hand dont know what the right hand is doing

Im sorry if i dont seem to be making much sense , had a bad day today and feeling quite poorly so my head is like a marshmellow lol
06-26-2010, 03:00 PM   #16
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Hey you make more sense than your gp seems to.
06-26-2010, 03:12 PM   #17
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Hey you make more sense than your gp seems to.
to be honest i think my 2 kids would make more sense than him
im waiting to be told that i have done all this to myself next week

this is the same GP who when i took my son to see him had a go at me for taking him on a saturday (my son has a serious ear disease and i was told by another gp at the same surgery that if my son starts having discharge coming out of his ear i had to get him to the surgery as an emergency)

Its a shame as all the other GP's at the surgery are fantastic but this guy seems to be of the oldschool where you "just get on with it and grin and bare it" obv with certain things though you cant just grin and bare it , i have been doing that for 7 years and im fed up with being expected to just put up with the agonising pain from the AS , the sleepless nights , the constant feeling sick and headaches , wanting to sleep ALL the time

One thing i have noticed since joining here though is that quite a few people have had the same sort of problems when it comes to GP's which is sad and quite scary considering GP's are meant to help people
06-26-2010, 03:56 PM   #18
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Hi there
If only some of the docs would listen and hear what it is that we are saying and recognise that we do know our bodies very well. I am about to start methotrexate for CD and I also have subchondral cysts and irregularities in my SI joints which causes me to lock up. Normally when I am sleeping. I get a bit of a fright. I have started a thread on the treatment page. I am interested as the methotrexate should calm the CD and SI joint pain as well. As yet I have not being DX with AS. But my specialists are wary of telling me I have something else as I seem to collect autoimmune based conditions. Hang in there and see if you can get either remicade or MTX. I know it can be hard to be assertive with some docs but I would encourage you to tell them what you need, and what you would like to try. The advice given previous is all good advice. I wish you a quick recovery and a positive way forward.
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06-26-2010, 04:26 PM   #19
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Just a query about the use of Celebrex. After the release of the new generation of NSAID's, the National Prescribing Service circulated this advice in Australia:

(The extract below is an example given on their website).

An example of the system in action: Celebrex
Celecoxib (Celebrex) became available for the treatment of arthritis in Australia in October 1999. It was put on the ADRAC ‘Drugs of Current Interest’ list for two years. Health professionals responded by submitting nearly 3000 suspected adverse reaction reports in that time. The reports enabled ADRAC to develop a comprehensive adverse reactions profile for the medicine. The resulting profile confirmed ADRAC’s initial impression that the adverse reactions of celecoxib were similar to those of other anti-inflammatory arthritis medicines*, except that serious gastro-intestinal effects** were less common. ADRAC kept health professionals informed of this knowledge through a series of articles in its bulletin and the Medical Journal of Australia. Recently, ADRAC changed its advice about celecoxib. In the August 2003 issue of its bulletin, it discussed the several hundred reports it had received of gastro-intestinal ulcers and bleeding during celecoxib treatment. Based on these reports and the clinical trial results, it concluded by saying that celecoxib should be used with the same caution as other antiinflammatory arthritis medicines. This example shows how Australia’s system for reporting and analysing suspected adverse reactions to medicines can strengthen and change the body of knowledge about a medicine. Some clinical trials of celecoxib indicated that it had fewer serious gastrointestinal effects than other anti-inflammatory arthritis medicines. The first two years of reporting appeared to confirm that picture. It was not until the medicine had been used by many thousands of consumers for long periods that a better understanding of the serious gastro-intestinal effects of the medicine emerged. As a result, the hope that celecoxib would be much less likely to cause gastrointestinal ulcers and bleeding than other antiinflammatory arthritis medicines seems not to have been fulfilled.

* The other anti-inflammatory arthritis medicines include naproxen (Anaprox, Inza, Naprosyn, Naprosyn SR, Naprogesic, Proxen SR) and diclofenac (Diclohexal, Voltaren, Voltaren Rapid).
** Serious gastro-intestinal effects include stomach and duodenal ulcers, and stomach and duodenal bleeding.


At the time Vioxx was also undergoing trials but has been withdrawn from the market due to side effects not related to gastrointestinal.
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