Newly diagnosed, frustrated and refusing meds

[Sarah17]

New to this kind of thing (forums and crohns). After 3 years of symptoms and spending the last 8 months doing endoscopies, blood tests and 2 specialists later. ...I was diagnosed with crohns last week. Being 22 this is highly frustrating. I use to have a very social life and liked to party. Well my friends still party and alcohol is almost intolerable. I'm not completely convinced it's crohns but then again I haven't got to hear what other people with crohns face.

Immediately they threw meds at me, Entocort?, and hyoscyamine,... now this is the first time I've allowed myself to research. Omg. The side effects freaked me out!!!!! No way I'm willingly ingesting such a poison. So after more research ... I've decided to use alternative routes. High nutrient, gmo free, 2/day meal replacement with a healthy dinner. I requested a referal to a nutritionist but that's not for 2 more weeks.

Basically, I'm completly overwhelmed by everything. ... I'm sitting at home yet again because I attempted a few drinks with the family ( from Wisconsin, its what we do) and ended up at home in the bathroom crying from immense stomach pain... nausea.. and yes, diahrrea.... this also happens with certain foods.

I'm desperate for advice/ tips
Anyone else refuse meds? What are you doing instead?

 

[DustyKat]

Hi Sarah and :welcome:

It is early days for you to be sure and little wonder you are so overwhelmed. :hug:

I don't have Crohn's but both of my children do and I am so very sorry that you now find yourself in the position you are. The first piece of advice I would give to you is to never say never. I know how awful the medications sound and how hard it is to even contemplate having them pass your lips but often is the case they are needed to give you your life back and in some cases to even save your life.
That is not to say that you will always have take medication as the disease will ebb and flow. Many people do find relief with alternative methods such diet but the key is getting to a good place first and then working on staying there by whatever means necessary.

Have a look at the Diet forum:

http://www.crohnsforum.com/forumdisplay.php?f=17

When people are flaring a low fibre is often the best way to go.

And also the Enteral Nutrition Forum (EN):

http://www.crohnsforum.com/forumdisplay.php?f=161

Used exclusively it can be just as successful as steroids at inducing remission.

Perhaps you might like to read up on Low Dose Naltrexone (LDN):

http://www.crohnsforum.com/forumdisplay.php?f=32

Again, depending on the severity of your disease don't limit your options by saying you won't do meds. Whilst scary they aren't poison and if it weren't for them many a member here wouldn't actually be here.

I hope you do indeed succeed in your chosen treatment path but remember, it is not a failure on your part if you don't. Good luck!

Dusty. xxx

 

[alex_chris]

New to this kind of thing (forums and crohns). After 3 years of symptoms and spending the last 8 months doing endoscopies, blood tests and 2 specialists later. ...I was diagnosed with crohns last week. Being 22 this is highly frustrating.

I was diagnosed at 18 and it took me years to really accept the diagnosis and start managing my Crohn's long term. I have to say, given that you were diagnosed last week and are already trying to get informed is a really good thing. Yes, it's frustrating to have something like Crohn's.

I use to have a very social life and liked to party. Well my friends still party and alcohol is almost intolerable. I'm not completely convinced it's crohns but then again I haven't got to hear what other people with crohns face.

As to the partying and social life, if you are in remission and do your partying *stressfree*, there is no reason whatsoever that this gets you into big problem with your Crohn's. Alcohol is a different matter. Hard liquor is usually not tolerated well. I can drink a few beers, wine etc., but anything that is excessive is not good.

Immediately they threw meds at me, Entocort?, and hyoscyamine,... now this is the first time I've allowed myself to research. Omg. The side effects freaked me out!!!!! No way I'm willingly ingesting such a poison. So after more research ... I've decided to use alternative routes. High nutrient, gmo free, 2/day meal replacement with a healthy dinner. I requested a referal to a nutritionist but that's not for 2 more weeks.

Diet is an important factor and getting to know what you can eat and what you shouldn't is key to long term management of Crohn's. Dustykat already posted a link to the diet section of the forum. In general there are some guidelines for Crohn's what to eat and what not (generally everything that is "too" anything is not good... too spicy, too salty, too oily, too greasy, too sweet, too sour etc.) but at the end it all depends on the individual. I am in remission and have been that way for about 16 months and I basically eat everything taking into consideration the general guidelines.

Re meds, unfortunately they are also an important key of the puzzle to get into deep remission for most Crohn's patients. I would suggest you get to read all the information that is out there on the standard treatments and why certain things are prescribed and what they do.

Entocort (which is a corticosteroid) is used to treat inflammation short term and should be taken not longer than a few weeks. The standard long-term treatments of Crohn's are with immunosuppressives (azathioprine/6mp) and/or biologics (remicade, humira etc.). Unless your symptoms are minor and you can control your Crohn's long term with just diet, sport, stress relief methods etc. (most Crohn's patients can't) you should consider one of the standard long-term management drugs sooner than later. Yes, there are certain potential side effects, but they are not material in the overall picture.

Basically, I'm completly overwhelmed by everything. ... I'm sitting at home yet again because I attempted a few drinks with the family ( from Wisconsin, its what we do) and ended up at home in the bathroom crying from immense stomach pain... nausea.. and yes, diahrrea.... this also happens with certain foods.

It's really hard to see a good way forward when you have just been diagnosed and have immediate problems. I can only suggest that you try to take a deep breath, eat something neutral like porridge or rice with lightly cooked chicken etc. today and then start to read as much about Crohn's as possible. The next step after all that would be to find a GI that you can trust and who has good experience with the long term management of Crohn's and can help you get the medication side of your Crohn's treatment in order while you find out what a good diet for you looks like and find other non-drug ways to manage Crohn's (for me it's sport, vitamin therapy)

 

[Sarah17]

I was pretty much trying to get out what I needed to get out but short version. Every doctor I've encountered during this has made it sooo frustrating. I had no choice but to research. The nurse who called me to tell me I had crohns also fed me incorrect info about it, thankfully I did do research. That same phone call is when I got entocort. No talking to my dr, no options given. I was going to be on it for 6 weeks until my next appt and go from there. I'm also a plasma donor. Which meds then cut $240 from my monthly income plus cost me.

Now meds... I'm not blind to the fda's processes or the multi trillion dollar pharmaceutical companies. I was during that research way before facing this. But I didn't want to voice my opinion about it because I don't want o cause tention to people who don't believe that.
But its something I feel strongly about and I told my dr I will exhaust all other options before I took any meds other than my hyscyamine ( which is as needed). And it took a lot for me to accept that.
And my crohns is not of genetic nature. Which leaves environment, given my beliefs, that makes it even more frustrating.

Stressfree is a term not generally being used by me. Lol the basics, bills , job, relationships. I'm a very ocd and stubborn person, which makes it harder on myself.
I have incorporated exercise into my daily life style which is helping.
And I'm hoping this nutritionist will also be able to advise me on what vitamins to take to get energy level back up.


In a way I feel like research is bad. I keep reading about surgeries and things and that is overwhelming to even think about. I'm just trying to do everything I can early for a better life later.


And the symptoms I had last night can be regular during a flare up.
And the crazy thing is I love spicey n peppers and it doesn't set me off or affect me. I have never experienced heart burn in my life. I don't add salt to food unless its sea salt. My diet now isnt horrible. . Just a lot of processed, gmo food. health food stores can get extremely expensive

But thanks for the replies... I really don't have anyone to talk to about everything.

 

[Jmrogers4]

Welcome to the forum,
I can only reiterate what others have said, getting yourself to remission is important. Untreated or undertreated Crohn's can bring its own host of issues.
I believe vitamins play an important role in Crohn's maintenance, particularly vitamin D and B12. Here is a great thread about Vitamin D and some research on it helping in Crohn's. http://www.crohnsforum.com/showthread.php?t=23826.

As DustyKat said have a look at LDN although it can be hard to get sometimes but it does not have all the side effects of some of the other drugs although not much research has been done on it in conjunction with Crohn's. My son has been on it for almost a year and doing really well. He is now the kid he was before crohn's and enjoying life and he as well as you has always had a pretty good diet. (He would come home from school and have steamed spinach as a snack, doesn't like cake, most cookies, chocolate). Here is the link to the LDN sections
http://www.crohnsforum.com/forumdisplay.php?f=32

I hope you find what works for you and you start feeling well and enjoying life

 

[Astra]

Hiya Sarah
and welcome

I refused my meds too, and I nearly died from an infection and peritonitis.
I won't go into the long story, just the facts.
Crohn's is inflammation, this causes scar tissue, this causes narrowing, this causes obstruction.
Don't be complacent, this disease is silent, and creeps up very slowly, and bites you on the arse, very quickly, without warning.
Take the Entocort, it isn't scary, it works by reducing inflammation, and once under control, adjust your diet, lifestyle, supps, exercise etc etc
By the way, I love spicy food and alcohol, I party like the rest of them, I've never had heart burn neither!
But I've got inflammation in my small bowel and I don't ignore it!
Take this from an old Crohnie and do your body a favour, take the meds and...
stay off the Internet! Any advice? speak to us.
good luck xxx

 

[xmdmom]

Welcome and glad you found the forum. It is definitely difficult to sort things out and figure out the best treatment path early on. There is so much information and there are different opinions out there. In addition everyone's disease is different so what works for one person may not work for you and vice versa.

My son was diagnosed when he was 19, 1 year ago with ileal crohn's. After some weeks on prednisone, he was advised to be on imuran but chose entocort since it has fewer and less serious potential side effects. Then we added low dose naltrexone. Also vit D, B12, iron and multivitamin and juicing and meditation. He has been reasonably controlled -no diarrhea but on and off mild stomach pains; weight is up now but he takes supplemental boost drinks. Anyhow, he has had no evident side effects with entocort except maybe burping. Alex-chris wrote that entocort is for only a few months but the doctor at the Cleveland Clinic says he has had patients on it for years and he would stick with it as long as it's working.

Sending positive healing thoughts your way!

 

[alex_chris]

I was pretty much trying to get out what I needed to get out but short version. Every doctor I've encountered during this has made it sooo frustrating. I had no choice but to research. The nurse who called me to tell me I had crohns also fed me incorrect info about it, thankfully I did do research. That same phone call is when I got entocort. No talking to my dr, no options given. I was going to be on it for 6 weeks until my next appt and go from there. I'm also a plasma donor. Which meds then cut $240 from my monthly income plus cost me.

There are some good GIs who know what they are talking about. I have moved several times in the last 14 years and lived in the US, the UK, Germany, Austria and Switzerland. The list of different docs I have seen is quite long. I estimate that about half of them were actually good at their job. So, I'd say look up GIs in your area (if your insurance covers visiting them) and try them.

As to drugs, Entocort is somewhat expensive (still those 240 bucks are nothing compared to the 20k or so people pay for humira or remicade per year...). But not all drugs that are used to treat Crohn's cost a lot. Azathioprine/6mp is an older drug, there are no patents on it any more. The generic version costs 19 Euros around here if you are not covered by insurance, it lasts me a month.

Now meds... I'm not blind to the fda's processes or the multi trillion dollar pharmaceutical companies. I was during that research way before facing this. But I didn't want to voice my opinion about it because I don't want o cause tention to people who don't believe that.

I am no fan of pharma companies either. Humira (one of the biologics) is the biggest cash cow Abbott's ever had (with 85% of all sales coming from the US market...).

But its something I feel strongly about and I told my dr I will exhaust all other options before I took any meds other than my hyscyamine ( which is as needed). And it took a lot for me to accept that.

As said above and also by others above, I can only stress that this may cause problems. There is a reason why for anyone except those with very light Crohn's, long-term drug use is suggested as the standard therapy. I didn't want to go on immunosuppressives (aza) respectively didn't have a good enough doc after I was diagnosed, and that resulted in surgery. If I could go back to 1999, I would handle things differently. I would start with aza immediately, in the right dosage. And I would also be stricter with my diet, vitamin and other deficiencies etc.

And my crohns is not of genetic nature. Which leaves environment, given my beliefs, that makes it even more frustrating.

Not quite sure what you mean with that.

Stressfree is a term not generally being used by me. Lol the basics, bills , job, relationships. I'm a very ocd and stubborn person, which makes it harder on myself.
I have incorporated exercise into my daily life style which is helping.
And I'm hoping this nutritionist will also be able to advise me on what vitamins to take to get energy level back up.

Don't put too much hopes into nutritionists. I have had talks with 3 different ones in 3 countries, all of them advising other Crohn's patients as well, and apart from a rather generic outline of 'do's' and 'don'ts' that actually don't really apply to me, they could only answer few if any more specific questions.

As to deficiencies, many people with Crohn's have vitamin D, B6, B12 defiencies and potentially also iron, magnesium, zinc, folic acid, calcium, pottassium etc. deficiencies. An apple a day and a glass or two of milk helps, but some additional supplements don't hurt. The most tricky of those deficiencies is iron. There are tons of threads here about treating iron deficiency induced anaemia *Crohn's friendly*.


In a way I feel like research is bad. I keep reading about surgeries and things and that is overwhelming to even think about. I'm just trying to do everything I can early for a better life later.

My diet now isnt horrible. . Just a lot of processed, gmo food. health food stores can get extremely expensive

A diet for Crohn's doesn't have to be expensive. Processed food (as in either frozen microwave food or otherwise prepackaged and processed food), however, ain't really what is recommended. There are actually tons of things you can cook quickly (10-15 minutes) that is probably cheaper than processed food and ends up being healthier. Example: oats porridge with a few slices of apple.

 

[Gculk]

Example: oats porridge with a few slices of apple.

Mmmmm. I'm going to get breakfast.

 

[Axelfl3333]

Must admit I enjoy a night out and with a bit care have no trouble with a drink,avoid lager,beer I,m guessing your American try hard lemonade,vodka based drink,they don,t seem to react,try a small amount at home in case of disaster where I,m from if you don,t drink you don,t go out.
P.s don,t go over the top though
P.p.s good luck

 

[UnXmas]

Hi, I’ve had bad experiences with doctors and with conventional medicine, I’ve also had bad experiences with quack nutritionists and alternative therapists. However, it’s conventional medications that have done me the most good. However, different approaches work for different people, and many manage to combine managing their illness with diet and lifestyle, etc., with conventional meds and/or surgery when necessary.

I know some of the meds for Crohn’s can do more harm than good, but the only way to find out what will work for you is to try. Find a doctor you trust. If you get side effects, bring them up with your doctor as there may be ways to counter them without forgoing medication. Not everyone gets every side effect. Although most people have some side effects from the harsher meds, often the ones you get will be much more manageable than you’d expect when you read the complete lists of side effects. When I read about prednisone, and when I’d read about people’s experiences of the med here on this forum, I expected to get hungry and gain weight from taking it, but when I took it I felt no hunger and actually lost weight. I've also never found that stress makes my illness any worse.

Many here will have different experiences from me, but processed foods don’t give me problems at all. I tried various whole-foods, organic, diets, elimination diets, etc. and all it did was leave me with less money and a lot of stress. There’s no reason to assume that you’ll have to give up foods or drinks you like or that your diet will become too expensive. That said, I hardly ever drink alcohol, and it hasn’t meant the death of my social life. Your friends might surprise you with their ability to accept you even if you aren’t able to drink.

 

[Axelfl3333]

I wouldn't,t get to hung up on the side effects leaflet with medications there pretty much a cover your backside thingies,ve just read the leaflet that came with my hay fever spray,scaryi,ve survived.crohns is a major nuisance but you,ll learn try not to stress about it you,ll adapt.
All the best

 

[DustyKat]

The only med that I am aware of that has a specific alcohol warning is Flagyl (Metronidazole). Alcohol does react with it in the form of having the potential to make you quite ill...severe vomiting, abdominal cramps, headaches, flushes. If you are on Flagyl it has to be remembered that when you finish the course you need to allow 48 hours for it to clear your system before consuming alcohol again.

Dusty. xxx

 

[Sarah17]

Jason.... yes, if the dr told me I had cancer I would still refuse meds. Given that there are over 20 cures to cancer that we as americans do not have access to and are lied to about.. I think I may have come to the wrong place for info. I was really looking to hear from people who were helpung themselves with alternative routes.....

 

[alex_chris]

Jason.... yes, if the dr told me I had cancer I would still refuse meds. Given that there are over 20 cures to cancer that we as americans do not have access to and are lied to about.. I think I may have come to the wrong place for info. I was really looking to hear from people who were helpung themselves with alternative routes.....

Hey Sarah, just another 2 cents from my side: yes, it's possible to get into remission and stay there without standard meds. So yes, you can go alternative routes (a functioning Crohn's diet, stress relief, looking out that you don't have vitamin or other deficiencies, sport etc.). As a matter of fact, if that would have worked for me without also taking azathioprine I would have never started any Crohn's meds.

Actually, I'd say I had 4 phases since I was diagnosed in 1999.

Phase 1: 1999 to 2003: basically on no meds (I was on 5-Asa, but I wouldn't even consider this "real" medication when it comes to Crohn's) - didn't turn out well, because I couldn't manage my Crohn's in those early years. Resulted in surgery due to two strictures in my smaller intestine.

Phase 2: 2003 to 2008: on azathioprine (although for years on a dosage that was too low...), *somewhat* remission from about 2003 to about 2006, then some problems, then sort of remission again, but still reoccuring problems, specifically anaemia and low body weight. Phased out aza in 2008 because things were *sort of* ok and I had problems with hemoglobin, so doc suggested to phase out aza and see.

Phase 3: 2008 to 2010: no meds at all, except iron supplements (that didn't work much). Generally in good condition early on, but degrading quickly end of 2009 and 2010, big problems for many months. Went back on aza after a high dosage corticosteroids treatment for 2 1/2 months to get severe inflammation under control.

Phase 4: 2010 to 2013: first things were better, but still battling anaemia (iron supplements still not working). Then end of 2011 in hospital to get blood transfusions. Started long-term treatment change at beginning of 2012 with sport, vitamin supplements, yoga, stress relief, more consequent diet - in remission for 15-16 months now.

As to meds, will I take them in the future? Personally, I'd say I probably phase aza out again if I stay in deep remission for another year and see what happens. This time around it might just work without any drugs.

Basically what I am trying to say is, it's extremely hard after being initially diagnosed to get your long-term management together with or without meds. Meds can help you somewhat. My take on Crohn's is that if you got problems at the moment, use the standard Crohn's meds until you are in good remission and then try to get off them and to stay in remission. Personally I feel getting to remission and staying there long-term with never taking any Crohn's meds is pretty damn hard (and potentially dangerous as I learned the hard way when I was young).

Cheers and I hope this helps a bit (even though it is not what you are looking for as an answer),
A

 

[DustyKat]

Jason.... yes, if the dr told me I had cancer I would still refuse meds. Given that there are over 20 cures to cancer that we as americans do not have access to and are lied to about.. I think I may have come to the wrong place for info. I was really looking to hear from people who were helpung themselves with alternative routes.....

Hey Sarah,

I don't know if you are still hanging around here but please know that the members are not discouraging from the path you choose you take, they are just speaking from their own personal experience and that is what the forum is about. We aren't doctors and the advice we give is own and ours alone.

There are members here that are managing their Crohn's without medication and doing very well indeed but as I said initially, the most important thing is to get the disease under control and to do that in the fastest possible manner so that damage to the gut is minimised.

I have been in the situation of seeing what untreated Crohn's has the capability of doing. My daughter was undiagnosed for 18 months and so did neither conventional medicine or any medicine/therapies for that matter. For her it was life threatening and we came within 24 hours of losing her.

Many people here come from this perspective, or something close to it. It is not that they don't believe in alternative therapies and for many they have already been down that path, it's just that they didn't work but that is not to say that they won't work for you. I don't think you would find one person here that wouldn't gladly give up their 'big pharma' meds for something 'natural' that worked and worked well.

There are no right or wrong decisions/opinions here just different ones. Your disease will change over time and you will experience different phases, all I am asking is that you keep your options and mind open. That will be the key to getting on top of your disease and you having control over it rather than the other way round.

Dusty. xxx

 

[Axelfl3333]

I can understand the miss angry but the meds generally help and its better than having no control over your backside.i find the forum useful and informative and I also realise from reading posts on here how lucky I am,it could be a lot worse.
Good luck

 

[Amy2]

We're trying to avoid strong drugs for my son, 16, who was diagnosed in March. Here's what we've done so far:

Hospitalized on 3/1. Given steroids for 3 days. Went home from the hospital on Pentasa and Previcid. Did 6 weeks of EEN (not a bite to eat, no lollypops, NOTHING). Went into remission and has felt great except for parts of a couple of days. One recent bout of diarrhea (one time) that was quite painful. Appears to be back on track. We've been following the SCD since 4/6.

 

[purdueCrohns]

You could suggest to your doctor to start on a more mild set of medications. I started my treatment on Pentasa. That kept me in remission for a year or so.

Being in a Crohn's flare is just as risky to your health as many of these medications.

 

[purdueCrohns]

I'd like to add that I'm on Remicade and can drink beer in moderation without problems now. I know the side effects are scary... but they are also very rare in most cases. These meds can give you your life back. If you go without meds your crohn's is only going to get worse. The only Crohn's med I'd try to avoid is 6MP.

 

[purdueCrohns]

Other supplementary medications:
Yogurt/Probiotics
Folic Acid
Vitamin D

 

[Clash]

purdueCrohns why would you avoid 6MP? I am just wondering since I've read of members who have maintained remission for years with 6MP, Jennifer comes to mind.

Is there something in particular that you are wanting to avoid with 6MP?

 

[purdueCrohns]

I have a friend that had his bone marrow stop producing white blood cells while on it. He had multiple white blood cell production crashes for about 6 months after stopping it. Maybe I'm giving too much weight to one bad experience.

 

[Clash]

I think that it is logical to weight something you are so personally connected to. My husband's niece is steroid dependent and she says it has wreaked havoc on her body so pred stresses me out way more than the combo of Remi/MTX that my son is on. I do understand your feelings. As much as I feared Pred, my son was on it initially while waiting for his Ped GI appt with no lasting side effects.

We all bring our personal experience in with the different medications or success/failure with them. I think it is important to understand that this disease is so individual. I agree with Dusty that it is so important to get the disease under control in the beginning.

 

[alex_chris]

I have a friend that had his bone marrow stop producing white blood cells while on it. He had multiple white blood cell production crashes for about 6 months after stopping it. Maybe I'm giving too much weight to one bad experience.

In terms of risk of long-term use of most common Crohn's meds are:

Pentasa < azathioprine/6mp < biologics (remicade, humira etc.) <= biologics + aza/6mp < effective remission inducing dosage of corticosteroids (prednisone, budesonide)

Except for corticosteroids, this is also the chain of likelihood of effectiveness, that is Pentasa is least likely to help while biologics + aza/6mp is most likely to be effective.

That being said, yes 6mp can have severe side effects, it is just statistically more likely that you experience severe side effects from biologics such as remicade or humira. HOWEVER, in the grand scheme of things all the above mentioned meds can be used looking at it from a risk/benefit viewpoint (except for cortiocosteroids which really, really only should be used short-term).

 

[purdueCrohns]

In crohn's treatment, every option should be on the table including your approach @Jasonwpg. It is certainly something someone who can't get better should consider. No one should be jumping on you. For me... I'm a data guy. While it may work for you, medicinal approaches offer the highest probability of holding a remission. Holding a remission is extremely important in Crohn's patients. The longer someone stays flared, the higher the probability of surgeries, cancers, and other complications.

 

[purdueCrohns]

One of the important part of the treatment for Crohn's is attitude. You have to believe that you can beat it. You have to believe that it's not going to stop you from doing anything.

Another thing... don't be complacent. Seek out the best doctor even if it is a long drive or even a plane ride away. It really does make a difference.

Be your own advocate. Don't be afraid to question the doctor's decisions. Sometimes a second opinion is in order (as long as you're not just fishing for the answer you want to hear)

 

[Jennifer]

purdueCrohns why would you avoid 6MP? I am just wondering since I've read of members who have maintained remission for years with 6MP, Jennifer comes to mind.

Yep. 6MP kept me in remission after my resection for about 13 years. Last year I switched to another med (still in remission, 14 years now) but overall I took 6MP for over 15 years with no side effects. As long as you have blood work done often (I had mine done once a month) you increase your chances of avoiding any major problems/damage that 6MP may cause.

There are good stories and bad stories to each medication and there are good stories and bad stories to each alternative treatment as well. Everyone is different and it may take time to find what works for you (not aimed at you Clash ).

 

[purdueCrohns]

There are more bad stories about people who refuse treatment than those that don't

 

[Sarah17]

And only like 3 ppl share what pertained to my question everyone else I feel just told me how I was making the wrong decision. Nor what I came for. Just wanted to hear other alternative routes to take. I didn't say I would never take meds just want to explore other ways before even considering. But tanks for the replies

 

[purdueCrohns]

We all care very much about every sick person with Crohn's. Please don't take offense to it. We have our opinions on Crohn's treatment and we're just sharing them.

 

[Clash]

Jennifer, as always you conveyed what I was trying to state but in a more eloquent succinct style! You rock!

 

[Sarah17]

And i am taking everyones comments into consideration. I do thank you guys for what you have taught me. i do realize its serious. I have dr approval to take this approach right now and am under supervision. If my dr felt that i really shouldnt, im sure he would have said so.

 

[purdueCrohns]

Internet battle aside, it is nice to see you taking ownership of yourself. I hope and pray you go into remission soon. If it comes to the point where you are ready to do meds, feel free to contact me if you have questions about what the doctor is telling you.

 

[Jmrogers4]

Let's remember this is a support forum and people have many different beliefs and ideas on how to treat their Crohn's all we can do is offer our insights and opinions in a positive way and sometimes it is just best to walk away rather then respond if you don't agree

 

[Sarah17]

which is why i felt it would be safe to post.. although im questioning now..but u always have bad apples. But i was just looking for alternative routes. It really was feeling like some were telling me i was wrong for this approach. and i wont know until i find out for myself.

 

[Lisa]

Please EVERYONE remember this is not a place to attack anyone, it is a place for support. There has been a LOT of good information shared here - and yes, not everyone will have the same thoughts/ideas on whether to medicate or not...

Please be RESPECTFUL of the opinions and input from others, and not resort to any name calling or other attacks of any kind.

 

[Lisa]

which is why i felt it would be safe to post.. although im questioning now..but u always have bad apples. But i was just looking for alternative routes. It really was feeling like some were telling me i was wrong for this approach. and i wont know until i find out for myself.

Sarah - not taking meds when you do not have the disease under control CAN be wrong - remember that inflammation can and will cause other problems if left untreated. My suggestion to you would be to get a second, or even thrid opinion, research all the facts, get your disease under control - if it takes meds to do that at first, seriously consider it!....you can always go off medications when things are under control - in fact that is what th ethinking was back when I was a child - take meds until in remission, then go off them until I flared again....round and round I went - until I was in a flare almost all the time (partly from not taking proper care of myself!).....

As of now, I can eat pretty much anything I want, go out and have drinks with friends, infact I'm planning on going home tonight and having a couple to help me sleep as I have a wicked head/chest cold.....BUT - I know my limits and adjust my social and work life accordingly.

 

[purdueCrohns]

Just remember when you make your decision that the longer you are "flaring," the higher your chances are for things like surgery.

 

[fishylove]

right now i am coming off another dose of prednisone and am looking at another option so i dont have to start remicade. We are going to this dr, i dont know his title, who does a whole mix of natural things to start and heal you. he has treated one other crohnsie very sucsessfully. It is a mix of diet(meal shakes 2x per day+1 meal, then gluten free for next 6 months), chiropractic approach, and like therapy. In one session he has found a list of things just a little bit off that all contribute to staying out of remission. i am really excited and think it will work as i can feel my flare progressively getting worse.
is there something like that in your area? i think it is called bioenergetic synchronization technique. it sounds like just what you are looking for

 

[Sarah17]

Fishylove. That is the EXACT type of reply I was looking for! !!!!!! Thank you sooooo much! !! I haven't heard of it but I will definitely be researching it!! I'm sure if anything UW Madison (Wisconsin) would have a dr that would do something like that and I'm not too far! Thanks again for the reply!

 

[Farmwife]

Hi Sarah and welcome.
I haven't read much through here, so hopefully I don't repeat to much.

My little lady is 4 yrs old. We are holistic in approach. We have an good GP for Grace.

If you don't mind I'll give a list of her vitamins. If you have Q's you can answer me here or PM me.

Vitamin D3- Important to all IBD'er. ***LISA*** is a very good advocate for this. If she's around, she respond to this.

Zinc - Helps the healing process and Grace is deficient in this.

These help heal the GI track

L-Glutamine
Curcumin

Grace has bad joint pains so she takes....
Bosswellia- This works wonders, not perfect but good.

Grace is also on LDN. We decided to add drugs because of the importance of getting her body into remission before horrible damage is done. LDN has little to no side effect but IF it works will be a safer (we hope) medicine to be on.

Have you looked into juicing?

Doing 6-8 weeks of EEN has also shown good success.

So many diets have shown good success also.
Are wonderful happy has done this.

Just some ideas. I hope it helps.

Now let me state what you know. :yfaint:
None of these things can CURE IBD but I believe doing all we can to help the body is the best medicine.

 

[alex_chris]

right now i am coming off another dose of prednisone and am looking at another option so i dont have to start remicade. We are going to this dr, i dont know his title, who does a whole mix of natural things to start and heal you. he has treated one other crohnsie very sucsessfully. It is a mix of diet(meal shakes 2x per day+1 meal, then gluten free for next 6 months), chiropractic approach, and like therapy. In one session he has found a list of things just a little bit off that all contribute to staying out of remission. i am really excited and think it will work as i can feel my flare progressively getting worse.
is there something like that in your area? i think it is called bioenergetic synchronization technique. it sounds like just what you are looking for

Just one question out of interest, is this doctor advising against the use of immunosuppressives or biologics in addition to the suggested non-drug elements of Crohn's management or does he recommend conventional drugs in addition?

 

[***Lisa***]

Thank you for tagging me, FarmWife.

Hi Sarah:

You and think the same way. I don't have Crohns, but my 20 year old daughter has been struggling with it for over five years and after following her GIs recommendations, taking a bunch of different meds (6MP, cipro, flagyl, Entocort, Remicade, etc.) and having them all fail (although Remicade did work for two years) she decided to stop all meds in October 2012 and med-free today. But it is't easy and we are not ruling out short-term meds when she is having a severe flare. When she had a flare in March she had two choices - (1) Go to the ER, as her GI recommended; or (2) Start a short course of prednisone. As much as she does not want to take any meds, she opted to take the prednisone and it was the right choice for her. She stopped taking prednisone two months ago and is holding her own now with diet & supplements. The most important supplement, we have found, is Vitamin D. She takes high doses of Vitamin D3 and a bunch of other supplements. She is not symptom-free at the time-being, but she is slowly working her way to full remission.

One thing you have to come to terms with is there is no short-term remedy... At least none that I or anyone in this forum is aware of. Controlling your symptoms is a life-long journey, but it can be managed.

Please private message me if you would like to chat.

Take care.

Lisa

 

[fishylove]

Just one question out of interest, is this doctor advising against the use of immunosuppressives or biologics in addition to the suggested non-drug elements of Crohn's management or does he recommend conventional drugs in addition?

It would be without other medications because the whole idea is that: the body, with a little bit of help, can heal itself. I dont know if i just stop 6mp(thats what i am on currently) to try this or if I ramp down during the diet portion, but the point of going down this path was that I would have to start(or could at least delay) going on remicade. I am going to this doc and my GI next week so I can write back once i know for sure
I had written a little more detail to sarah17 if you wish to hear it