Decided to STOP all meds!

Well...    I have decided to stop taking my meds...    I have tried it all....   Pentasa, Budesodine, Immuran, and the last one I was on was Humira...   Humira made me sooooo sick!!!!   I was tired and felt like I had the flu every day for about a year....

I talked it over with the Dr...   So he is aware of this...   We talked for about an hour.....

I have been off Humira for about a month now and am feeling soooo much better already!    People in my life have also noticed that I look better and have more energy.

So, I am sure this will not be a popular post...    But I just am soooo happy that I got the balls to actually talk about this with my doc.  

But I am sure there might be at least one other person that feels like the meds are sometimes doing more damage than good.

Okay....   Well, if I still have friends after this post....   I will keep you posted!   :)

 

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28 Yrs

Michigan

Newly diagnosed with Crohns

Wow, Curly... do you do anything diet-wise to help your CD? Do you take any supplements like probiotics? Best wishes--keep us posted!

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Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)

Good luck with your new med free lifestyle.

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              Never go faster than your guardian angel can fly!                  

     Be Patient And Tough, Someday This Pain Will Be Useful To You 

 

 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!

                                                Margie11

Congrats.  Im pretty much off all my drugs, just finished my prednisone last tuesday!  I talked with my GI about stopping the Humira because I feel that it is doing NOTHING for me but scaring the crap out of me (no pun intended) every other week when I get that dreadful shot.  My GI felt I should stay on it, but it really is up to me, he cant MAKE me take it, I think the next time I go in I'm going to talk to him about it again, I would really feel better if we came to an agreement of me discontinuing it instead me doing it against his advise.  I feel so tired on it, and just so like slumpy.  I do however, and will continue to take many vitamins and a probiotic.  I'm also a "fat" girl with Crohns, I have constant D, Im at least 50lbs overweight... I dunno how I keep the weight on..sometimes I wish I wouldnt lol.

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Dianogsed with Crohns: At 16 years old. 22 years old now.

Surgeries:2 Bowel Resections, Gallbladder Removed.

Current Meds: Humira (bi-weekly), 5mg Pred (tapering), Nexium, B12 injections.

 

www.myspace.com/mastermelissa

Yep decided that years ago when I figured out the doctors had no more of a clue than my dog did. Good luck :)

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SCD since 01, remission since 01, occasional Arby's breaks :)

Curly9878 said...
Nope, I do not really have problems with food... I can tolerate pretty much everything.

In fact I am a fat girl with Chrons! :)

I just uncontrollable HORRIBLE pain from time to time... But I must have a weird case of Chrons... Cause I can eat whatever I want.

By "diet-wise", I didn't mean anything regarding weight. It just struck me when you said you were going off meds, that you might want to try one of the proven diets--which are essentially carb restricted diets--to help your Crohn's. If you stopped feeding the bad bacteria in your gut with those carbs, you might experience relief from the horrible pain you have from time to time and potentially lessen the chance of disease progression. Just a thought!

My son has been on the SCD for almost a year and a half now. In June his doctor told him he should discontinue his only medication. He experiences no pain, no bloating, no bleeding, no C or D, no mucous any more, no nothing. I'm only throwing this out there out of concern! I wish you nothing but the best!!!

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Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)

Emom, I think with those of us who are fat crohnies SCD does not work as well.  In fact I have always wondered if this was some sort of subset within the crohns disease dx.

Like we are type "three" of crohns disease like there are 34 different kinds of lung cancer.

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^{Forum Co-moderator - Crohn's Disease}

_{^{...I will find a way, or make one. -Philip Sidney 1554-1586}}

_{Make sure your suffering has meaning...}

_{All suggestions/options/opinions are caveated with please consult with your local health care provider...}

Well I personally don't agree with the no meds route, but some people such as PB4 are literally allergic to all medications, and maybe you are too. PB4 though does treat her Crohns with natural supplements and diet. I think you should at least take a good probiotic and maybe look into watching your diet as suggested above. Just because you can eat anything doesn't mean you should. You should probably remove the starches and refined sugars from your diet to help yourself out some. I wish you good luck, but after having this disease as long as I have, I worry when someone doesnt take meds or watch their diet.

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Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.

Curly -

Congrats on being med free. I've felt that the meds I take to control my UC make me feel run down and tired all the time, because when I was off them, yeah I went into a flare pretty quickly, but I actually had energy and a desire to do stuff besides sleep. Unfortunately that desire was quashed by the 20 times I had to use the bathroom a day, but at least I feeling better in general. I would agree that maybe you should take a probiotic, but if you are fine w/out, do what you think best. Be sure to contact your doc if you begin to show symptoms again, and keep us posted on how you are doing. Good luck, and enjoy your remission!

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Brandon

36 y.o. male

Diagnosed w/ UC in May '06

Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone (2.5mg/day, back up to 7.5mg), flaxseed oil, L-glutamine, magnesium, and vit B-12.

Tried the spinach/sunflower diet.  Saw some relief in symptoms after 1 month, but symptoms returned with the taper off prednisone.

Next up - experimental and trial drugs.

Good luck to you my friend! Sometimes we have to think about the QUALITY if our lives, and sometimes these medications can certainly hamper that. While I take Asacol, I certainly hope to not go up that ladder of harder medications. The side effects almost scare me more then the disease itself. Prednisone is as much as I've taken, and lord knows that wasn't fun.

Personally I have zero interest in these diets people are doing. To me restricting my diet THAT much, and taking that much of my time making everything homemade would also greatly hamper my quality of life. I'd have to be pretty darn sick, with no options to consider that. Also for me I'm not exactly convinced that it works for everyone, I've had inflammatory responses from Crohn's elsewhere in my body during a flare, not just in my gut. I don't like blaming our symptoms or flare up's on just diet. I think it's great if people are feeling better and can handle these diets. But I certainly don't think they are for everyone. Same goes for certain medications! We are all so different!

I wish you all the best!

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~Jennifer

 

Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure).

Curly, I have to wonder though if you're still having some symptoms that it may possibly be related to some things that you are eating/drinking...some of us (as nanners mentioned) are either allergic or non-responsive to traditional oral RX (as I am) and I'm thankful in a way because of the horrid side-effects but I have to say that I'm doing much better with the naturals and diet change then before when I wasn't taking naturals and just eating whatever. So you may want to consider a few naturals, like probiotics for sure and one or 2 natural anti-inflammatories along with cutting fast-foods, processd foods/beverages, animal fats, caffeine and refined sugar out of your diet...you'll likely shed some pounds in doing so...my biggest concern for over-weight IBDers is the fact that it can make some extra intestinal manifestations develop easier due to the excess weight, osteo and arthritis...and being over weight in general isn't healthy as we all know...I was a few pounds overweight once for a short time because I found it so uncomfortable since my whole life (exlcuding 2 pregnancies) I've always been slim. So I know what it's like to try and lose weight with good old fashioned diet and exercise and the energy and overall well being is well worth it.

:)

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My bum is broken....there's a big crack down the middle of it! LOL :)

Carbs are some of my safe foods! When I'm in a flare I can eat breads, pasta, and potatoes without pain. I love meat too much to give it up. LOL It doesn't hurt me either, as long as it's lean meat. I also like to keep it in my diet since I've had a lot of anemia problems.

I have a whole list of no no foods though. A lot sadly being things like salad, I try to eat those sparingly. A big no no when flaring. So I agree we should play with our diet to make sure and figure out what things do hurt us. I'm just not a big believer in it keeping us in remission. I think the disease is a lot more complex then that.

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~Jennifer

 

Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure).