- Joined
- Jul 18, 2009
- Messages
- 25
Hi all
I have read this forum on and off looking for information for a few months now and have generally found it very helpful. I also really admire many of the people here, who are dealing amazingly with symptoms far worse than my own. However, I have reached a point of significant frustration and have some questions which I am hoping I can get some help with here. I will give a bit of background in case it helps.
Diagnosis
Briefly, I was diagnosed with Crohn's in my terminal ileum rather unexpectedly about 3-4 months ago. Although I have had digestive problems on and off for about 2 years (intermittent D, which got significantly worse about 6 months ago), I had assumed these were related to a trip to Africa I took in 2007 where I took a large amount of antibiotics as an anti-malarial, or to a subsequent incident where I took some non-steroidal anti-inflammatories for an unrelated shoulder injury which seemed to wreak havoc with my digestive system. Having read various medical books/papers on the subject of the causes of Crohn's I remain suspicious that one of both of these incident may have triggered the disease.
In any event, I now have what my specialist describes as mild Crohn's. I live in Australia. Treatment and information here both seem relatively backwards compared to the USA.
My Doctor and His Drug Approach
My specialist appears to be quite competent in terms of diagnosis. Unfortunately, he is very rigid in his attitude to the disease - basically he insists that the one and only realistic option is to bombard my system with prednisolone until remission is achieved, then to attempt to maintain remission using Pentasa. He is of the view that diet is irrelevant to maintaining remission unless I can identify something specific which triggers an attack. He does seem to accept that fat and "high residue" diets can cause attacks (I have no doubt about the former although I do doubt the latter).
His strategy with prednisolone is to set up a pre-determined tapering scheme - so, for instance, upon diagnosis I was immediately put onto a tapered dose of prednisolone which started at 50mg for a week, then 37.5mg for a week, and so on right down to 7.5mg. This appeared to work reasonably well other than the horrible side effects I experienced, but then on 7.5mg (a "maintenance dose") I was ok for about a month but then suddenly got very sick. My doctor's response was to put me back on the same scheme again, i.e. a pre-determined tapered dose starting at 50mg then methodically dropping week by week (actually 5 days at a time).
This second time I appeared to be doing ok again but as my dose has come down past about 20mg I seem to be getting sick again. Today I am down to 8.5mg (tapering down 0.5mg a day after my own research into the best way to get off steroids safely), and suddenly I am very ill again.
I am also very frustrated - I loathe the drug, both because of its side effects and because everything I read indicates that even medium-term use is a terrible idea. I find my doctor's attitude ridiculous insofar as he denies that diet is a trigger or a factor in maintaining remission. Although I am classified as a mild case, I am also finding the psychological impact of my diagnosis quite severe - I am a highly independent 29 year old professional, and quite a driven person. I am struggling to adjust to the idea that I have to carry this disease with me from now on. I am also a keen amateur cook and finding it extremely difficult to adjust to the idea that indeed I may not be able to eat whatever and whenever I want.
All that being said, what I really feel like I need at the moment is real information in plain English from people who know what they are talking about - which seems like it might be some of you people! Well, I hope so.
My Questions
So, my questions:
1. Is a mechanical, pre-determined schedule for taking and tapering off prednisolone an appropriate approach? It seems to me odd that I would be told to taper off at a pre-determined rate (e.g. X for 5 days then Y for 5 days, etc etc) rather than monitoring my symptoms and tapering off according to what they are (or hopefully, their absence).
2. What really is an 'attack' and what are its implications? E.g. if I am doing fine for a month and then I suddenly have a bout of bad D and pain/cramps for a day or so, am I back to square one and as far from remission as I was a month ago? If we were treating steroids as our only treatment option (as my doctor insists) would a day or two of D be a reason to up the dose again, or is it possible to 'ride it out'? I have read another thread here about what remission actually is, but am not sure I understand what the consensus (if any) is - with mild disease, should I expect to be symptom-free in 'remission'?
3. Am I right to think that it is ridiculous to discount diet as a significant factor in achieving and maintaining remission??? It's a digestive disease, after all. To me it seems that saying diet is irrelevant makes as much sense as telling someone with a broken leg that whether they walk around on it or not is irrelevant to its healing.
4. Is prednisolone interchangeable with prednisone for the purposes of what I read on this forum and elsewhere?
5. Am I being too paranoid about steroids? - I really, really want to get off them, even after a couple of months. On high doses they make me feel insane with agitation and bad temper and utterly destroy my (already very poor) sleep patterns, as well as making my need to urinate frequently and giving me crazy night sweats. I am also very anxious about osteoperosis, eye problems, and 'training' the disease to be dependent on the presence of steroids, which seems like a real possibility too.
6. Has anyone else experienced a link between a heavy dose of antibiotics or NSAIDs and the onset of Crohn's? I was symptom-free before taking a heavyish course of doxycyclene (for about a month) and my symptoms deteriorated significantly when taking a NSAID (Celebrex).
7. Is a multi-pronged approach appropriate? Right now I am taking the prednisolone, pentasa, fish oil, probiotics and attempting to modify my diet marginally to improve the chances of remission.
Any thoughts on any of the foregoing would be greatly appreciated - at the moment I am stuck with little information and little support from people who understand the disease, although I have wonderful emotional support from my partner.
I have read this forum on and off looking for information for a few months now and have generally found it very helpful. I also really admire many of the people here, who are dealing amazingly with symptoms far worse than my own. However, I have reached a point of significant frustration and have some questions which I am hoping I can get some help with here. I will give a bit of background in case it helps.
Diagnosis
Briefly, I was diagnosed with Crohn's in my terminal ileum rather unexpectedly about 3-4 months ago. Although I have had digestive problems on and off for about 2 years (intermittent D, which got significantly worse about 6 months ago), I had assumed these were related to a trip to Africa I took in 2007 where I took a large amount of antibiotics as an anti-malarial, or to a subsequent incident where I took some non-steroidal anti-inflammatories for an unrelated shoulder injury which seemed to wreak havoc with my digestive system. Having read various medical books/papers on the subject of the causes of Crohn's I remain suspicious that one of both of these incident may have triggered the disease.
In any event, I now have what my specialist describes as mild Crohn's. I live in Australia. Treatment and information here both seem relatively backwards compared to the USA.
My Doctor and His Drug Approach
My specialist appears to be quite competent in terms of diagnosis. Unfortunately, he is very rigid in his attitude to the disease - basically he insists that the one and only realistic option is to bombard my system with prednisolone until remission is achieved, then to attempt to maintain remission using Pentasa. He is of the view that diet is irrelevant to maintaining remission unless I can identify something specific which triggers an attack. He does seem to accept that fat and "high residue" diets can cause attacks (I have no doubt about the former although I do doubt the latter).
His strategy with prednisolone is to set up a pre-determined tapering scheme - so, for instance, upon diagnosis I was immediately put onto a tapered dose of prednisolone which started at 50mg for a week, then 37.5mg for a week, and so on right down to 7.5mg. This appeared to work reasonably well other than the horrible side effects I experienced, but then on 7.5mg (a "maintenance dose") I was ok for about a month but then suddenly got very sick. My doctor's response was to put me back on the same scheme again, i.e. a pre-determined tapered dose starting at 50mg then methodically dropping week by week (actually 5 days at a time).
This second time I appeared to be doing ok again but as my dose has come down past about 20mg I seem to be getting sick again. Today I am down to 8.5mg (tapering down 0.5mg a day after my own research into the best way to get off steroids safely), and suddenly I am very ill again.
I am also very frustrated - I loathe the drug, both because of its side effects and because everything I read indicates that even medium-term use is a terrible idea. I find my doctor's attitude ridiculous insofar as he denies that diet is a trigger or a factor in maintaining remission. Although I am classified as a mild case, I am also finding the psychological impact of my diagnosis quite severe - I am a highly independent 29 year old professional, and quite a driven person. I am struggling to adjust to the idea that I have to carry this disease with me from now on. I am also a keen amateur cook and finding it extremely difficult to adjust to the idea that indeed I may not be able to eat whatever and whenever I want.
All that being said, what I really feel like I need at the moment is real information in plain English from people who know what they are talking about - which seems like it might be some of you people! Well, I hope so.
My Questions
So, my questions:
1. Is a mechanical, pre-determined schedule for taking and tapering off prednisolone an appropriate approach? It seems to me odd that I would be told to taper off at a pre-determined rate (e.g. X for 5 days then Y for 5 days, etc etc) rather than monitoring my symptoms and tapering off according to what they are (or hopefully, their absence).
2. What really is an 'attack' and what are its implications? E.g. if I am doing fine for a month and then I suddenly have a bout of bad D and pain/cramps for a day or so, am I back to square one and as far from remission as I was a month ago? If we were treating steroids as our only treatment option (as my doctor insists) would a day or two of D be a reason to up the dose again, or is it possible to 'ride it out'? I have read another thread here about what remission actually is, but am not sure I understand what the consensus (if any) is - with mild disease, should I expect to be symptom-free in 'remission'?
3. Am I right to think that it is ridiculous to discount diet as a significant factor in achieving and maintaining remission??? It's a digestive disease, after all. To me it seems that saying diet is irrelevant makes as much sense as telling someone with a broken leg that whether they walk around on it or not is irrelevant to its healing.
4. Is prednisolone interchangeable with prednisone for the purposes of what I read on this forum and elsewhere?
5. Am I being too paranoid about steroids? - I really, really want to get off them, even after a couple of months. On high doses they make me feel insane with agitation and bad temper and utterly destroy my (already very poor) sleep patterns, as well as making my need to urinate frequently and giving me crazy night sweats. I am also very anxious about osteoperosis, eye problems, and 'training' the disease to be dependent on the presence of steroids, which seems like a real possibility too.
6. Has anyone else experienced a link between a heavy dose of antibiotics or NSAIDs and the onset of Crohn's? I was symptom-free before taking a heavyish course of doxycyclene (for about a month) and my symptoms deteriorated significantly when taking a NSAID (Celebrex).
7. Is a multi-pronged approach appropriate? Right now I am taking the prednisolone, pentasa, fish oil, probiotics and attempting to modify my diet marginally to improve the chances of remission.
Any thoughts on any of the foregoing would be greatly appreciated - at the moment I am stuck with little information and little support from people who understand the disease, although I have wonderful emotional support from my partner.
