I was an inpatient for 2 weeks, i was initially told ulcerated colitis but on discharge the consultant told me i had crohns, sent me home with steroids, pentasa, adcal and cocodomols. He said he would see me in a few months....thats it. I am home and in agony, i have been told to reduce a steroid every week so on discharge I had 5 a day and now after 2 weeks i have dropped to 3 a day. I am totally wiped out! I am up all night with constant leg pain which no pain relief eases so I end up having to get up as lying down makes it worse. I have shoulder and elbow pain in both arms and now ive reduced the steroids the previous lumps and pain around my eye has returned. I saw my gp today who told me to go back up to 4 steroids until my consultant appointment 17th dec and keep taking pain relief. I am off work and not able to get ssp but am too rough to manage my shifts. im exhausted. i wasnt this bad before so wonder if its the meds making me worse. my husband thinks i should ditch the meds and go herbal, anyone tried this? im confused and fed up of this pain. is this how it will always be?
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Just diagnosed, confused and in pain :(
- Thread starter kelly1979
- Start date
Hello!
I had a similar experience in April of this year. Admitted from my first clinic after the colorectal surgeon looked at the blood test results my GP ordered and had a week of IV steroids before being discharged on a weaning dose of prednisolone. Unfortunately, whenever I got below 30mg the symptoms flared right back up, resulting in daily sickness, pain, nausea, etc. I saw my GP who kept upping the dose, and then saw my GI consultant who approved me for Humira a month later.
It's difficult to see how much of an impact meds are having, especially when we don't know what would be happening if we weren't taking them. Some certainly have side effects, but a lot of them do work. Even after surgery I have been much worse when not on one steroid or another. In my experience, symptoms can worsen, or new ones appear, very quickly, and it could be that the meds are slowing that process down and we don't know because they are working, even if it doesn't feel like it.
Until your disease is under control and you have a feeling for what makes it worse for you, or better, I'd stick with the conventional meds. Herbal supplements might help, but until it's under control I think you're better with the tried and tested. I've tried going the natural route for other illnesses and it did not end well (the last time was herbal stuff for asthma- interestingly that's inflammation in the airways- and ended up nearly dying at the hands of an asthma attack). A lot of people report success with herbal or natural stuff, but I'm always very, very wary of them, at least if being used in stead of conventional meds rather than in conjunction with.
I'm seven months into my journey with this swine of an illness and still trying to work out what meds are going to work. I think patience is the name of the game, which doesn't help us when we're feeling crap, I know.
I hope you start to feel better soon.
I had a similar experience in April of this year. Admitted from my first clinic after the colorectal surgeon looked at the blood test results my GP ordered and had a week of IV steroids before being discharged on a weaning dose of prednisolone. Unfortunately, whenever I got below 30mg the symptoms flared right back up, resulting in daily sickness, pain, nausea, etc. I saw my GP who kept upping the dose, and then saw my GI consultant who approved me for Humira a month later.
It's difficult to see how much of an impact meds are having, especially when we don't know what would be happening if we weren't taking them. Some certainly have side effects, but a lot of them do work. Even after surgery I have been much worse when not on one steroid or another. In my experience, symptoms can worsen, or new ones appear, very quickly, and it could be that the meds are slowing that process down and we don't know because they are working, even if it doesn't feel like it.
Until your disease is under control and you have a feeling for what makes it worse for you, or better, I'd stick with the conventional meds. Herbal supplements might help, but until it's under control I think you're better with the tried and tested. I've tried going the natural route for other illnesses and it did not end well (the last time was herbal stuff for asthma- interestingly that's inflammation in the airways- and ended up nearly dying at the hands of an asthma attack). A lot of people report success with herbal or natural stuff, but I'm always very, very wary of them, at least if being used in stead of conventional meds rather than in conjunction with.
I'm seven months into my journey with this swine of an illness and still trying to work out what meds are going to work. I think patience is the name of the game, which doesn't help us when we're feeling crap, I know.
I hope you start to feel better soon.
Nope. It won't always be this way. You will get through this rough spot and feel better. From my experience diagnosis was the worst. I was so incredibly sick. You really do need to stick with pharmaceutical drugs to get out of your flare. When you go into remission you can mess around with changes to diet and take a more natural approach and that even depends upon the severity of your disease. IBD is not something to mess around with. Follow doctor's orders. At first delayed treatment with Biologics because my hubs and I feared the side effects and wanted a more natural approach to treatment...and my disease got worse with multiple hospitizations AND blood transfusions AND surgeries in the first year of Crohn's diagnosis. Don't worry about what other people think, you need to get yourself better and that likely means pharmaceuticals.