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Crohn's Disease
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Corkblowin wrote: »Bit depressed at the mo. Had an ileostomy 12 years ago & was flying after it. Wasn't on any drugs for 8 years & got to the stage where I actually forgot I had a bag (led to some delicate conversations on the rare nights I somehow brought a woman home with me & was questioned about the scar! But that's another story!:) )
But around october I began getting cramps & pains again - went to outpatients for usual tests - found some thickening but nothing too serious - but pains kept getting worse & worse. Eventually I ended up in a&e where they discovered a 45mm abscess. A few nights stay & course of antibiotics & all was well. However they said an urgent test was needed to see if the fistula had tracked. I went in to them 4 weeks later for a check up & mentioned the test again - was beginning to feel pretty bad again.
A further 6 weeks later, in severe pain again to the extent I couldnt change the bag without crying & no sign of an appointment despite numerous calls, I eventually went to a private consultant who checked me out & found everything had advanced much further - to the extent that my stoma was now so compromised that it can't be saved. So on Monday I'm heading in to get the whole thing refashioned and the stoma relocated to the other side. So pissed off as i believe if I'd been looked after properly, or been more insistent when I was calling them, that this could have been avoided. Grrrrrr :mad: it's shocking that the only way to have the system treat you is to present yourself at a&e.
If anyone is unsure about something or feels that things aren't right, don't hesitate - straight to a&e or your consultant & don't let go until you're happy!!
Have to say that for me, it's the only way to get things done...i'm not going through the bs of going to my doctor, get a letter, wait for an appointment to see someone.
I don't care how much the A&E staff moan and bitch at me for not following "proper proceadures", i know my body...i wouldn't present myself to A&E if something wasn't wrong.
And every single time i was found to be right, so my advice is forge ahead....don't take no for an answer, state your case and be strong, arm yourself with information about your condition.
The A&E docs are just there to filter, nothing more....they try kick as many out now to reduce admissions etc., they couldn't do that with me as i'm not an idiot....my ESR and CRP levels were up, my bloods and iron/protien were abnormal....yet they still tried to kick me out.
I stood my ground and was proved to be right {fistula}....so i say to anyone who thinks they have a problem, get to see a proper non A&E/on call doctor or consultant. Stay in A&E or squat....
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Bad time of it lately. Feeling really horrible...bloated and puffy. I'm eating but it feels like food is "getting stuck" r not moving. bowel movements horrendus. nothing for days then the runs. dont even feel the pain anymore think i've just gotten used to it. i'm really uncomfortable
Have very sore gums and sores on my lips too. Have to wait till wed for gp visit. Really need to get more informed about how to manage this bloody thing..
Tis the only way, research...use legit sites not the hack ones that scare the beejesus out of you. You sound as if you got an inflamatory issue that needs addressing.
Let us know how you get on 0 -
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Northern Monkey wrote: »Hope everyone is well!
Just wondering if any of you have had any experience with humira? I was back with my consultant today and he mentioned the possibility of putting me on it. To give you an idea of where I'm at currently... I've been on 150mg of imuran for a while now and to me it seemed to be doing the job (certainly in a much better place than where I was pre treatment), I haven't had any issue with bleeding in at least 6 months and my bowel movements have been in the most part controllable. I'm still having issues with cramps (probably 3 or 4 severe cases in the last 6 months and another 10 or so minor flair ups where you know something isn't quite right, but you are still able to get on with what you are doing). The consultant thinks putting me on humira will help with this and could put me into full remission, but has given me the choice of going with it or staying on imuram. He has made me aware of the potential side effects and risks, but I'm just wondering how everyone here who has been on it has found it.
Cheers
Can only speak for myself but i've found Humira to be very effictive...at the moment i'm on a combo of Humira 40mg every two weeks + Imruan 100mg a-day. I get the pen injection typr Humira, i do it myself....tis very easy once you get used to it
The injection type freak me out as i'm not good at inserting needles and knowing depth etc. the pens eliminate this....it's a sharp sting, it sets the depth and split second into your thight etc.
While there is a very comprehensive lists of (sometimes very nasty) side effects i personally have not had any major issues. But regular blood tests is a must.
I say be checked once a month, Abbott have a good after care service....they send out a nurse/rep to show you how to inject, give you a very lavish care package....seriously!, you should see the kit they give you
They call you often to check up with you etc., if you're on Humira this service should be offered to you as part of the treatment. You'll also get a sharps bin for the pens, Abbott will come collect the old one and give you a new one when it's filled.
Humira i find is very good as it allows me to avoid the horrendous steroids...but as with any drug you need to be vigilent, report any side effects, if it's not agreeing with you consult your doctor....just basically look after yourself 0 -
Corkblowin wrote: »If anyone is unsure about something or feels that things aren't right, don't hesitate - straight to a&e or your consultant & don't let go until you're happy!!
Oh, absolutely! I know that when I was going through my bad flare, the only person I'd ring was the hospital to ask to talk to someone on the gastro team. They'd either prescribe something for me or tell me to come to the outpatient clinic the following Monday. There was a period of about six weeks that I presented myself every Monday morning at outpatients without an appointment and they'd slot me in. Granted, I was one of the last but I was seen. I also used to regularly cry during appointments, I was that sick and miserable but I didn't care. I was through being stoic.
My cousin is a nurse and she told me that sometimes the only way to get the doctors to properly pay heed to what you are telling them is to keep at them, which completely sucks because if you're that sick, you barely have enough energy to keep yourself together, never mind going after doctors time and time again.
I'm sorry for everyone going through a rough time right now and I hope there are solutions and good times around the corner for you.0 -
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Hello all,
just wondering has anyone ever gone from taking mercaptopurine (puri-nethol) in tablet form to liquid form?
Apparently there is no medical difference whatsoever, just looking for people's experiences.
Hi . I was told that liquid form is the same as tablet form . I am on the same medication as u (puri-nethol ) . Last year due to supply levels I was told I may put on liquid form as well but supplies were sorted again .. Would think tabs are easier though . Don't know how it is administered either ? Could there may danger of taking too much ?0 -
Richard Dower wrote: »Can only speak for myself but i've found Humira to be very effictive...at the moment i'm on a combo of Humira 40mg every two weeks + Imruan 100mg a-day. I get the pen injection typr Humira, i do it myself....tis very easy once you get used to it
The injection type freak me out as i'm not good at inserting needles and knowing depth etc. the pens eliminate this....it's a sharp sting, it sets the depth and split second into your thight etc.
While there is a very comprehensive lists of (sometimes very nasty) side effects i personally have not had any major issues. But regular blood tests is a must.
I say be checked once a month, Abbott have a good after care service....they send out a nurse/rep to show you how to inject, give you a very lavish care package....seriously!, you should see the kit they give you
They call you often to check up with you etc., if you're on Humira this service should be offered to you as part of the treatment. You'll also get a sharps bin for the pens, Abbott will come collect the old one and give you a new one when it's filled.
Humira i find is very good as it allows me to avoid the horrendous steroids...but as with any drug you need to be vigilent, report any side effects, if it's not agreeing with you consult your doctor....just basically look after yourself
Thanks Richard,
My consultant told me he was going to give me a leaflet on it and then produced what I can only assume is the kit you are talking about! (black folder with a few leaflets and a case for storage.)
I was comptemplating just sticking with imuran as my symptoms have been what I would consider minor for a good few months, but I have had cramps all week this week, so have changed my mind.
I think it was the self injecting more than anything that was putting me off, but I like the sound of the pen type you mention.
Thanks again0 -
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hi, my mam has ulcerative colitis & has been on a colostomy bag for around 8 years which she is well used to by now but ever since the numerous operations in Vincents hospital she has suffered with fistulas which turned into a sinus tract infection that they cant seem to get rid of. My mam has had operations, drains fitted & a electric vac that her doctor swore would work but the sinus tract/abcess has gone from 5cm to 15cm & is now in her pelvic bone which i can imagine would be very painful. Her doctor is Dr Hyland in St Vincents Hospital who is supposed to be the top specialist in this area in Ireland but they simply have run out of options for my mam & the pain medication etc etc is now causing liver damage...Im just wondering if theres anyone who is in a similar situation & knows any other doctors or alternatives??? Thanks 0
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hi all, just found tis thread now!!!! have the olde crohns now 10 years!!! how time flys when ure havin fun!!!! was grand last 2 years, thaught the consultant had made a mistake 10 years!! no tablets or anyting!!was off running half marathons and doing big cycles!! till, last november, really felt ****, went 2 docs, and apparently i had no blood!!!!! lol. now im waitin on this new iron transfusion? has anybody had it done b4?? 0
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delthedriver wrote: »Steroids are sometimes a necessary evil with our condition. Be aware that at some stage you will start eating like a horse! which sometimes can be no bad thing and when you are off them you will think back and laugh at the ends you went to to eat. You will probably end up with a 'moon face' and weight gain but dont worry about it as it will disappear quite quickly when you finish with the steroids. The main side effect I found was the mood swings, a lack of tolerance and wanting everything done straight away and not understanding why people could not just do things as quickly as I wanted them done. It is amazing thinking back on it and would love to have known in advance that this is how I would react with the steroids as it would have made life a bit easier. Bursting into tears every now and then for no good reason can also be another side effect but if you know it is all down to the drugs you will be ok. Take them and get well soon.
Thanks for your reply
I got the tablets today and will start them in the morning. I spoke to the pharmacist and he gave advice. I should be finished the course in about 2 months and shouldn't have many side-effects. He suggested to take them in the morning with breakfast as they can affect sleep. I feel I've put some weight on recently so I better keep an eye on that
I'll take note of what you said above and might keep a small diary of any side effects. I'll update this thread in a few weeks to let you know how I'm getting on 0 -
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Yeah, got anemic, still dont understand it! Anyway,got nice little package in the post tis morn, 4 bags of klen prep! U tink in tis day and age, they wud hve a little pill 4 the preperation!!
There is a pill, it's just only for the Barium meal X-rays stuff and the like that they give it for. The clean prep is quite literally there to flush you out for a thorough examination. Hope it goes well btw.:)
I get terrible mood swings on steroids I can be almost hyper euphoric at times and not really think clearly about I'm saying. Still though that part of the package and I think they're worth it. 0 -
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In addition to what everyone else mentioned. I'd just like to add one more thing. If you do find yourself going through mood swings on the steroids I find it nice to get some respite through music. Just slip on a pair of headphones every now and again, block everything out and try to relax. I find that helps me stay that bit more composed when I've no real choice but to communicate with others. Oh and it also helps if your closest friends know what to expect of you, because a good friend can really help you maintain your composure.
Wish you the very best of luck,0 -
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