Top Down or Bottom Up?
- Thread starter Asher
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My gastro tried a bottom up approach. Unfortunately in the five years that I have been diagnosed I've now tried and failed pretty much all the licensed medications available, except methotrexate which I refuse to use for personal reasons.
I just went with what my gastro advised. At that point I knew nothing about Crohn's, but even now, knowing more about it that is the route I'd prefer to take.
I just went with what my gastro advised. At that point I knew nothing about Crohn's, but even now, knowing more about it that is the route I'd prefer to take.
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Bottum up and I believe this is the wrong choice for every patient.
I started with 3 years of 5-Asa only, which had been shown to be not more effective than a placebo for Crohn's - as a result of the constant inflammation I needed surgery.
I think a new patient has only three options on the drug front, biologics, azathioprine/6mp or the combination. The classical bottom up approach does not use any of those and thus is obviously wrong.
I think the discussion today should be on the guidance newly diagnosed patients should receive regarding diet/how to prepare food/what and how to eat, sport, stress relief and supplements. Unfortunately most doctors utterly fail at these elements which I think make up the principle treatment. Drugs help, but they are utterly useless if people eat stuff they should not eat, constantly have bad stress, don't do any physical activity and have all kinds of vitamin and other deficiencies which are untreated.
I started with 3 years of 5-Asa only, which had been shown to be not more effective than a placebo for Crohn's - as a result of the constant inflammation I needed surgery.
I think a new patient has only three options on the drug front, biologics, azathioprine/6mp or the combination. The classical bottom up approach does not use any of those and thus is obviously wrong.
I think the discussion today should be on the guidance newly diagnosed patients should receive regarding diet/how to prepare food/what and how to eat, sport, stress relief and supplements. Unfortunately most doctors utterly fail at these elements which I think make up the principle treatment. Drugs help, but they are utterly useless if people eat stuff they should not eat, constantly have bad stress, don't do any physical activity and have all kinds of vitamin and other deficiencies which are untreated.
Not really "top down", but was initially given prednisolone (tapering dose) plus 6mp. Seemed heavy handed at the time (and I was unsettled by the mental "fog" I experienced at 50mg 6mp - half dose, I know!) Psychologically we seemed to be hitting an ant with a sledge hammer..
4 years later, and a change of GI, am in histological remission on 2.5gm daily of sulfasalazine, with some topical steroid cream and topical anti inflammatory gel for the EIMs (iritis quiet!!)
HD
4 years later, and a change of GI, am in histological remission on 2.5gm daily of sulfasalazine, with some topical steroid cream and topical anti inflammatory gel for the EIMs (iritis quiet!!)
HD
As for diet, I am still cautious about fibre. Lots of cooked veges, some fruit - strawberries, banana, rock melon (am currently experimenting with peeled raw apple)
Lean protein - scrambled eggs with reduced fat cheese is a regular favourite.
Oranges and lettuce are best avoided..
HD
Lean protein - scrambled eggs with reduced fat cheese is a regular favourite.
Oranges and lettuce are best avoided..
HD
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I believe many doctors are now looking at a top down approach. My son went from the very 'bottom' to the 'top' in one move.
When he was diagnosed, he was with a ped GI. His treatment was six weeks of exclusive enteral nutrition (formula only, no food) to induce remission. It did induce clinical remission (no outward symptoms) and did reduce inflammation. He then continued on supplemental EN (1/2 dose, regular diet) for the next year and a half. During follow-ups, ped GI did mention that metho or other might be needed as MREs continued to show inflammation (but still no outward symptoms). but, as all else seemed fine, GI was content to leave supplemental EN as the only treatment. As my son would be transferred to an adult GI in the coming months, I believe that may have played into his decision to leave treatment untouched and let his new (adult) GI make the decision for future, continuing treatment.
Upon transfer to adult GI, this GI was adamant that the continuing inflammation would eventually bring about serious issues, possibly surgery and strongly recommended remicade.
I did question LDN (GI didn't feel there was enough research) and other immunosuppressants such as 6MP, aza or metho. GI explained that remicade (or humira) were the best out there, so why not use them now? Rather than use something that would possibly not be as successful and then be in a position where the 'best' would no longer be able to treat the complications (ie scar tissue requiring surgery). My son did not want to risk surgery and chose to move straight to remicade.
Wasn't an easy decision for me when he felt and looked good but MREs and scope told a different story.
My other 'justifications' were that:
1. it seems many people eventually move to biologics anyway, so I thought it made sense to go with the 'best' and try to dodge any permanent damage
2. seems cancer risk is greater when an immunosuppressant and then biologic are used, again thought if I could skip the immunosuppressant, would minimize risk (more recently, have read that cancer risk seems to be more linked to immunosuppressors rather than biologic - but not sure how accurate this is)
3. also have read that remicade (perhaps, all biologics) have a greater success rate if used as the first drug treatment and if used within two years of diagnosis - both applied to my son.
But, having said all this, there is no right or wrong way to treat. Although my son has had no problems with remicade thus far, I still would have preferred to have tried LDN first. But, without a crystal ball, there's no way of knowing how things would have turned out. All you can do is make a decision based on the information you have and what you are comfortable with. :ghug:
When he was diagnosed, he was with a ped GI. His treatment was six weeks of exclusive enteral nutrition (formula only, no food) to induce remission. It did induce clinical remission (no outward symptoms) and did reduce inflammation. He then continued on supplemental EN (1/2 dose, regular diet) for the next year and a half. During follow-ups, ped GI did mention that metho or other might be needed as MREs continued to show inflammation (but still no outward symptoms). but, as all else seemed fine, GI was content to leave supplemental EN as the only treatment. As my son would be transferred to an adult GI in the coming months, I believe that may have played into his decision to leave treatment untouched and let his new (adult) GI make the decision for future, continuing treatment.
Upon transfer to adult GI, this GI was adamant that the continuing inflammation would eventually bring about serious issues, possibly surgery and strongly recommended remicade.
I did question LDN (GI didn't feel there was enough research) and other immunosuppressants such as 6MP, aza or metho. GI explained that remicade (or humira) were the best out there, so why not use them now? Rather than use something that would possibly not be as successful and then be in a position where the 'best' would no longer be able to treat the complications (ie scar tissue requiring surgery). My son did not want to risk surgery and chose to move straight to remicade.
Wasn't an easy decision for me when he felt and looked good but MREs and scope told a different story.
My other 'justifications' were that:
1. it seems many people eventually move to biologics anyway, so I thought it made sense to go with the 'best' and try to dodge any permanent damage
2. seems cancer risk is greater when an immunosuppressant and then biologic are used, again thought if I could skip the immunosuppressant, would minimize risk (more recently, have read that cancer risk seems to be more linked to immunosuppressors rather than biologic - but not sure how accurate this is)
3. also have read that remicade (perhaps, all biologics) have a greater success rate if used as the first drug treatment and if used within two years of diagnosis - both applied to my son.
But, having said all this, there is no right or wrong way to treat. Although my son has had no problems with remicade thus far, I still would have preferred to have tried LDN first. But, without a crystal ball, there's no way of knowing how things would have turned out. All you can do is make a decision based on the information you have and what you are comfortable with. :ghug:
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DustyKat
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After much reading over the years I would have to say that from the paediatric angle the top down approach is definitely the way go. If it is an adult diagnosis however then I do feel that others factors come into play and the decision would be dependent on the type of Crohn’s you have, its location and its severity.
Depending on your geographical location that may also play a part in how your treatment plan is decided upon. For those in countries with universal healthcare there may be specific guidelines that need to be met before a biologic is approved for use, these are somewhat relaxed with a paediatric patient. In such cases a modified bottom up approach is generally used. By modified I mean that you don’t necessarily move up the steps in chronological order as the 5ASA’s may well be skipped and treatment commenced with the immunosuppressives.
Hope that hasn’t thoroughly confused you! :lol:
Dusty. xxx
Depending on your geographical location that may also play a part in how your treatment plan is decided upon. For those in countries with universal healthcare there may be specific guidelines that need to be met before a biologic is approved for use, these are somewhat relaxed with a paediatric patient. In such cases a modified bottom up approach is generally used. By modified I mean that you don’t necessarily move up the steps in chronological order as the 5ASA’s may well be skipped and treatment commenced with the immunosuppressives.
Hope that hasn’t thoroughly confused you! :lol:
Dusty. xxx
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