Is there ever a time when you don't need meds?

[DawnG]

I had an appointment with my GI the other day because I'm having yet another flare. He offered to put me in Entocort again (3rd round since January) and I declined. Solely because I am better on the steroids, but it doesn't treat the problem. He said he is hesitant to treat my Crohn's until I see a Rheumatologist, which is in June.

My question is: he said I would need Humira for lifetime. This seems quite overwhelming. Is there ever a time when you don't need meds?? I don't mean to sound uneducated about this, but I truly thought I could treat this and hopefully have a remission and not needs meds.

Thoughts?? Thank you.

 

[ColorsofHeaven]

I have been off medications for almost 13 years now. I am in remission. It is possible to not take medications. It is always your choice to continue on a medication or not and diet has a lot to do with getting better.

 

[wild_one353]

generally speaking, chronic disease(like IBD) = chronic medication to improve the functioning of your body.Some people are lucky enough to have mild cases that respond very well to little to no medication and perhaps some dietary improvement. my guess would be 10-20% are this lucky, most likely you need to take meds everyday.

 

[boussole]

I once asked my GI about that and he told me only the mild cases can be that lucky. But they usually have to check more what they eat than someone who continues to take medicines even when doing fine.


It may be cause I am flaring since September and missing food so much, but in my case, to eat whatever I want, I'd take the pills!! :ylol2:

 

[DawnG]

So, that's my next question... On a vegan diet. What diets do you recommend?

 

[wild_one353]

So, that's my next question... On a vegan diet. What diets do you recommend?

Avoiding meat and milk is great for IBD. Fermented dairy product might actually help though, but slightly.

Read the book Breaking the vicious cycle and learn more about the SCD diet. Some of this information has been helpful too me like avoiding lactose and sucrose(refined sugar) and avoid certain starches like potatoes corn and rice. it recommends making homeade yogurt which can be more potent the commercial yogurt, ive had problems with this but may try again.

 

[ColorsofHeaven]

generally speaking, chronic disease(like IBD) = chronic medication to improve the functioning of your body.Some people are lucky enough to have mild cases that respond very well to little to no medication and perhaps some dietary improvement. my guess would be 10-20% are this lucky, most likely you need to take meds everyday.

Probiotics that are refrigerated (non-refrigerated are dead) replace natural flora and can help along with diet. You state mild cases, but I knew a man who had advised me he had a severe case for 35 years and until he got put on a high dose of prescribed probiotics (he was able to get off all medications) he finally was able to live a normal lifestyle. If it wasn't for him telling me about it back in 2007 I wouldn't be doing as well as I am now.

 

[Clash]

I would think it depends on what someone would label severe and what someone considers remission. Clinical remission was the standard for a long time which meant achieving a lifestyle with minimal symptoms. Researchers found that with clinical remission symptoms may not be present but unless you had full mucosal healing then simmering inflammation could persist and cause irreparable damage.

The goal set by most GIs now is deep stable remission that includes clinical, endoscopic and histological remission with full mucosal healing.

For a lot of people diet can eliminate some symptoms but symptoms elimination doesn't equate full remission or absence of active inflammation doing damage.

No matter the route of treatment, frequent blood work, fecal calprotectin tests and regular imaging and scopes allow you to determine if your choice of treatment is truly working.

Once my son started biologics the biggest improvement I saw was in his energy levels. It was truly night and day. A teenager shouldn't suffer from severe fatigue and it is always a good indicator that something is going on the inside for us.

 

[DawnG]

Thank you!! I have been beyond exhausted and I have two little ones at home, so you can imagine. I really appreciate all the information. I am hoping the right treatment will come soon, once all the doctors agree on a treatment.

Best of luck to you.

 

[D Bergy]

I don't take Meds, but I do treat myself using an alternative treatment, and I am fairly sure I always will have to. From what I have gathered so far, there are pathogens involved with the symptoms, four of them so far in my case, and as long as they are there, the potential for problems is there also. All these pathogens can be re-acquired, even if you do manage to eliminate them.

In order to guarantee no future Crohn's problems you would have to know the cause or causes for the immune systems inability to remove these pathogens on its own. Even then, you would have to have a corrective solution to fix the problem or problems.

You can go into remission for longer times, but I am not going to chance it. It hit me hard last time and required surgery.

Good luck

Dan

 

[Justanothercp]

Sadly, I don't think I'll ever be without Meds. My md said, better to take the Meds than keep having to have bowel resections....
I've had really good success with Paleo diet, honestly changed my life as far as my day to day comfort level. But it does take a lot of work.

 

[Lady Organic]

I have been off medications for almost 13 years now. I am in remission. It is possible to not take medications. It is always your choice to continue on a medication or not and diet has a lot to do with getting better.

Its great you are doing good. But NOT everyone has this chance. Even with the most strict diets, I relapsed with the CD and still have the CD chronic arthritis. I have researched everything possible on the subject and have been extremly motivated with dieting for years now. I still am even if I got flares while on them.

that being said, DawnG, you have a chance to try alternatives such as diets in the meantime of your GI decision. You could try the IBD-AID, Paleo, or SCD diets for exemple. It does work for some people. fallow the link in my signature for IBD-AID. good luck.

 

[LodgeLady]

After 3 years of testing and trying diets and medications we found that LDN seems to be the answer for me. Narrowing down the area and type of Crohns is crucial. Sorry but those who can halt thier symptoms with diet alone are extremely lucky and I would bet is not the norm. I am hoping to wean off my other meds and see if LDN alone keeps me in remission. Best of luck. It is a very long journey finding out what will work for you.

 

[UnXmas]

I wouldn't say it's a choice to take medication or not. And the same goes for surgery. To choose not to take medication would, for a lot of people, mean accepting poorer health. I've heard people say that "popping pills" is easy and that putting effort into diet and life style is hard work but brings better results. Anyone who's had a course of prednisone or who's had major surgery will know that a lot of conventional medicine's treatments for Crohn's (and most other medical contitions) are not easy and take a lot of time and effort and sacrifice, and a lot of emotional strength. It's also not an either/or situation: your diet and lifestlye and medical treatments work together and benefit each other.

I don't think being off medicine needs to be the goal to aim for. I think it's best to hope that you find the treatments that are best for you. Some people will be susceptible to particular dangerous side effects, or will particularly dislike side effects even if they're not dangerous. Some people will respond well to particular medications or will have preferences for surgery over medications or vice versa.

Conventional medications can do things that simply cannot be acheived with diet or alternative therapies. But they need a good doctor who can judge the best ways to use them.

I don't know if I really answered your questions or got a bit side tracked. I don't think I will ever manage without medication. But I don't think medications should be viewed as inherently bad, despite the side effects they cause.

 

[UnXmas]

The best diet for me is low fibre, plain, bland, soft food. Nothing rich or spicy. Refined grains and sugar are easier to digest than whole grains and are less filling which is very helpful when trying to gain weight. Semi-liquids are also good (liquids leave the stomach faster than solids) like ice cream, yoghurt, custard, etc. (Dairy causes me no problems.) Supplements are helpful for providing vitamins. But having a stoma that works properly (my first two didn't) has meant I am able to eat much more fibre than I used to be able to. So since my last surgery my ideal diet has been changed.

I tried a lot of other diets in the past. I always stuck to them 100%. Omitting gluten, sugar, dairy, all processed food, all non-organic food, getting tested for "intolerances" and taking them out, taking probiotics and many other supplements. But really I just needed to eat the foods that are easiest to digest. And take some medications and get an ileostomy.