New member of forum old diagnoses of crohns

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new member of forum old diagnoses of crohns

Hi all, im new here, but was diagnosed 10 years ago with crohns .. my first intro to it was extreme and i lost over two stone in 10 days .. after a long haul of treatment, (steroids) and Codine (painkillers) i went back to work for a little while and travelled and never really returned to hospital. Not much after care if any was given at the time.
I have now returned to hospital for treatment after a flare up. (ileum) i have been given steroids and another treatment of medicine so far so good, but i am still in so much pain around my back (as if i have a bra on thats too small) its crampy and tight and hurts sooo much! It was painful down my right side for years and now i know it is caued by crohns .. but have not been given painkillers and have tried paracetmol .. i was given gavescon (for heart burn!) but now i am in pain but still not wanting to stop meds .... anyway glad i found a forum! i dont work full time because of my fatigue and i also suffer with depression so its a vicious circle! im in the uk and london gets very stressful at times for me... i have finally found hte NACC and this forum and new meds, so perhaps things will look up soon, does anyone else get this much pain though? x thanks
 
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Hello and welcome to the forum :bigwave: Back pain does seem to be a fairly common issue mentioned on the forum, I will get a really achy pain in my lower back when my crohns is acting up and my knees and hands get affected as well. You may have already tried this but heat pads can sometimes help. Other than that I just take paracetamol, it sometimes works and sometimes doesn't, Ibrufen is a no no for people with crohns so we can't try that. What have the docs got to say about it? What other med are you on with the steroids? Glad you have found us here, it's good to have another brit onboard!
 
Can't believe you have had the same back pains as I have had. I have spent a fortune on new bras or tops with support in, I thought it was just me. Any idea what it is? xxx
 
Hi There. I'm new as well, since September after a month in hospital I was living on painkillers for simillar pain. Then in mid december I started on Modulen and haven't eaten any food since or taken any painkillers for three and a half weeks. Gaining weight and feeling great. Anything is worth a try.
Chippy
 
Hi CC - glad you found this forum - I was diagnosed with Crohns years ago (after a misdiagnosis of cancer) and I too lost alot of weight - I went down to 4 stone 13lbs - and my mental and physical appearance went back to about a 12 year old - it was a freaky and very scary time.
For once my Crohns isn't too bad - my problem is the Crohns related arthritis - I have permanent back pain due to the osteoporosis I also have. But I vaguely remember having back pain when my Crohns was so bad way back when.
I also suffer from depression and fatigue - my doc has told me I'll never work again - hey ho.
I really hope that your meds get sorted and you're on the mend soon
Gentle hugs from Cornwall :hug:
 
new member of forum old diagnoses of crohns

Aaawww thanks all for your welcome's and interesting responses, it all helps knowing you are not the only one! ( i never thought i would say that!)
Well, my first diagnoses, also critical and it was also nearly diagnosed as cancer, i lost 2 and a half stone (going to 5 stone) back in the day, but i have actually gained more weight now and am 10 half stone, not bothered about being larger to be honest just very petite and not used to carrying the extra weight or have the clothes to go with it!
Anyway! cant remember the exact steroids i was on previously but due to the seriousness of it, loss of huge amounts of blood and weight i was put on 15 steroids a day ... But this flare up now, its down to two a day 3 mg from 9mg already, and the other tablets are Azathioprine 50 mg a day ... for ever?? im not sure, have read that normally you take them for years ... i only started them wednesday so am frequently having blood tests etc ...so, we see how it goes.
I too have changed bras etc even to the point where i dont wear them for comfort reasons and just wear layers, before the flare up diagnoses i thought it was a trapped nerve or something, :ybiggrin: i fear i wont work again, i certainly wont work in an office and have a heavy job ever again, but trained as an actress and dancer so gutted that i cannot dance and may not be able to again, but sing a little and have scarse work in film, but with the depression, fatigue, aches and the general health as you all know, it is sooo exhausting keeping up with everything, and even getting up outa bed most days! Although i am in bits at the mo, i do remember when i was first diagnosed, i had a high profile, very well paid job in a top part of london and was wheeled out of work in to hospital and thought i would never be able to walk again, i was crawling across the floor in so much pain, its easy to forget those times, but atleast i am not in that state now, and very very glad to have found you all :thumright: i think once we have been lucky enough to have the diagnoses and the treatments its important to understnad yourself and know your limits, yoga helps alot, meditation and also looking in to trying to work for me in my time at my pace, its the only way i think, i do like my little luxuries in life and have not had any for a while so its important to try and come up with ways to earn money, and yes, even paying my rent can be a luxury sometimes with no stress!! "note to self" get back to doctor to seek advise on the aches, also hands, knees, legs seemingly all over and every muscle! i am sure gaviscon cant be the answer! i did ask the specialist about liquid diet and she looked at me strangely lol x i will see how i go for he next few weeks .. oh also, i will try the heat pads, i havent thought of that, thank yooou! and even though we take alot of meds i try not to take painkillers, and always been aware of the ibofren thing but will try more paracetmol (cant spell it!) :heart: lots of healthy hugs to all x :hug:
 
Looks like we can be Aza buddies! I re-started it in Wednesday also but at a lower dose due to a previous issue with it. The theory is this can be a long term treatment so lets keep our fingers crossed. I just love the weekly blood tests that I have coming - I am a bit of ghoul :) Why did the specialist look at you funny when you mentioned the liquid diet? This can be a good way to perhap 'detox' your body and then have a thorough look at your deit etc. I would advice anyone to have a look at the thread by happy who has managed to get into remission by really sorting out what they eat. Depending on how you are with food this could be a big help, I tend have flares even when on liquids only so at this time I don't think this would work for me but I will keep it in mind for the future.
 
Good Morning! :ybiggrin: Yeay! yes we can, i am not too sure about it mylsef and due to my pain, my friend reckons i should stop taking it... he doesnt really understand and i am willing to give it s try, i am sure it isnt really in my sytem yet anyway, and he probably just hasnt noticed the pain i am in! oh well, thats guys lol x
i tend to play down the pain as much as poss any way.
I think the DR looked at me funny because i have put on so much weight and dont really look like i am not taking foods that well, or perhaps she wasnt keen to push it if its not needed at this time, but i will push it in another couple of weeks, for the detox reasons and also everytime i am eating it doesnt feel like its going anywhere and just lodging in and around my stomach.
I remember from my first original flare up i got well, put on the weight needed and returned to work, soon after i had a huge break down and was exhausted and left work, after a year of anti depressants and various treatments, councilling and crohns treatment i began yoga and completely changed my diet, i was on top form andi know i need to get back to that now, i basically lived off soya milk, raw carrotts dipped in humous, pitta breads, and carried dried fruit n nuts with me for munches through out the day... it seems nuts prob arent good for me this time round though, i think the weight has been put on because i permimnntly stopped smoking (never smoked much anyway) but binged out on lots of bread cakes and sweet things for a few months and low n behold, 2 and half stone later! i get a flare up (which actually had been flared up for some time just had refused to accept it!) so when i normally lose a ton of weight i am stuck with the extra load.. part of me hopes i do lose some of it as i look pregnant and get offered seats or questioned about "how long im gone" every where i go lol !! Not always bad, because people don't understand crohns still, and becuase you dont a limb missing, people dont believe or understand the pain and the need to sit down .. ut it is tolerance levels and like you say, perhaps the doc is concerened that i may even get a flare up even on the liquid diet, i will talk to my gp too about it, i nee to pass al the info from the hospital over to her, because im still not sure that gaviscon is the answer, it doesnt work, its just a placebo i think! have a good day :soledance:
 
:rosette1: Hey CC! Yup, I am familiar with the back pain fun as well. I'm not sure you have them in the UK (although I would think so) but I get those stick on heat patches. One patch will last about 8 hours---you can get different sizes, etc. There is also a wrap around heat patch/belt, too. The brand name is ThermaCare. Also, I have used the icy hot patches, too. Sometimes they are helpful, but I prefer heat. The icy hot patches are made by Ben Gay, and other brands are available as well. How about those stretchy sports bras? I wear one of those at night. You can also get (and I'm not sure exactly what they are called) support camis. They are like a tank top made of the stretchy/slick kind of material. I haven't tried those, mainly because they are quite expensive. Not sure how you sleep--but I have a long body pillow that I put between my legs to keep my spine nice and straight while sleeping. Hope this helps--also sending you good thoughts and well-wishes for remission!:) Dana
 
Hi, welcome :)

i agree with Angrbird, you should definitely try heat pads, I've got one that you pop in the microwave for a minute to heat up and it really helps with my back pain as I also try not take pain meds (also has a nice lavender scent with it to :) )

Whereabouts in London are you? not surprised it can be stressful!

Hope that azathioprine works out for you :) x
 
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