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Decided to STOP all meds!

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Crohn's Disease
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Posted 12/6/2008 3:32 AM (GMT 0)
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!   :)

 

Posted 12/6/2008 3:42 AM (GMT 0)
I think its great if u can get of ur meds but i hope u dont suffer down the track. I do understand where u are coming from and agree mostly. I to seem to think that the drugs that i am on make me feel worse most of the time. I am also on humira and so far havent found much relief but then I havent been on it for long either, Ive just had my 3rd dose and hoping it makes a difference soon. I am sure no one is going to blame u for the decision u have made, we all have to do whats best for ourselves. At least u discussed it with ur doc as well and didnt just do it. Take care and I really hope u stay well, please keep us posted
andorable
Posted 12/6/2008 3:55 AM (GMT 0)
Wow, Curly... do you do anything diet-wise to help your CD? Do you take any supplements like probiotics? Best wishes--keep us posted! :-)
Posted 12/6/2008 4:04 AM (GMT 0)

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.

Posted 12/6/2008 4:14 AM (GMT 0)
Good luck with your new med free lifestyle.
Posted 12/6/2008 5:38 AM (GMT 0)
Go you! Keep a close eye on yourself just in case things start to slip... but I really do wish you the BEST of luck. It takes a lot of guts to do what you're doing... (a bad and unintentional pun, sorry).

Seriously though.... all respect. I hope everything keeps getting better!
Posted 12/6/2008 5:39 AM (GMT 0)
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.

Posted 12/6/2008 12:20 PM (GMT 0)
Hi Curly I am glad you are feeling better and hope it continues. As far as being popular well I beleave in giving support to people's decisions and I know it isn't easy to make choices. So don't feel all alone. Good luck and let us know how things are going. lol gail
Posted 12/6/2008 1:13 PM (GMT 0)
Yep decided that years ago when I figured out the doctors had no more of a clue than my dog did. Good luck :)
Posted 12/6/2008 2:17 PM (GMT 0)
Well, I can't say that I'm not very worried for you, but you've obviously thought a lot about this so I wish you the best of luck. Just please, be careful and don't feel too proud to start even some sort of maintenance medication again should things get work. And obviously ignore the devil on your shoulder when it comes to eating forbidden food..I hope you keep feeling better :)
Posted 12/6/2008 2:35 PM (GMT 0)

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!!!
Posted 12/6/2008 4:20 PM (GMT 0)
Wow, thanks everybody!!!! I was not sure how this would do over with the group... But you guys rock!
Posted 12/6/2008 4:52 PM (GMT 0)

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.

Posted 12/6/2008 6:06 PM (GMT 0)
I'm sure there are many types of Crohn's; not all individuals respond well to dietary control (although Lutz put it at 85%, a figure that is strangely identical to the figure that Atkins reached for his own patients with Crohn's). It seems likely there are different causes, and different organisms. If Ebringer is right and it's caused by klebsiella, then the different organisms that move in with the initial damage- like MAP or maybe the organism that causes the (very rare) Whipple's disease- lead different patients down different paths.

Curly, if I had one recommendation, it'd be a simple one- but probably a tough one to follow: cut out the starch. At the very least, reduce your starch intake. If the infectious disease theory of Crohn's is right, and it's due to klebsiella, the discomfort is caused by your body confusing a starch-degrading enzyme produced by klebsiella with your body's own collagen- the collagen in your gut, in fact. Stop feeding the klebsiella, and the disease slows its progress. (And if you read "Good Calories, Bad Calories" by Taubes, he notes that the data strongly indicate that weight control is more tightly tied to intake of too many carbs, not too many fats. Kill two birds with one stone.)

Good luck!
Posted 12/6/2008 6:43 PM (GMT 0)
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.
Posted 12/6/2008 7:21 PM (GMT 0)

When I had an active Crohns, it gave me pain. Because my Crohns is in the distal jejunum, it's in the intestines but a bit before we come to terminal ileum (which often leads to pain and diarrhea).

Even if I only have pain, (which is due to a narrowing in that part mentioned), the inflammation is still there, and if I stop using medication, the inflammation could increase and give me more narrowed intestines, which often leads to surgery.

I don't use any typical Crohns medications, because my doctor won't let me, because I have another serious disease diagnose, which may be worse if I use medicines that suppresses my immune system.

If you find you're better off using no medication, consider a diet without sugar, starches and carbs. Because the inflammation is still there and is doing serious damage to your intestines even if you only have pain as the only symptoms. If you decide to find out more about any kind of nutrition/diet to avoid that your intestines will get worse, why not ask people in here for this, they know a lot and are doing these diets so they have a lot of experience.


Post Edited (BeeSting) : 12/6/2008 1:01:55 PM (GMT-7)

Posted 12/6/2008 8:49 PM (GMT 0)
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!
Posted 12/7/2008 1:12 AM (GMT 0)
Good luck baby,keep us posted!!!  I quit Humira also,with my doctors acknowledgement,ofcoarse wink    I have been on Asacol and Imuran together for years,and those TNF agents scare the heck out of me,I actually got drug induced lupus from it,agghhh!!! I also eat anything I want,doesn't affect me at all. Hang in there smilewinkgrin
Posted 12/7/2008 2:07 AM (GMT 0)
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!
Posted 12/7/2008 2:43 AM (GMT 0)
I have fairly mild Chron's--4-5 movements daily, without pain, but the colonoscopy has been consistently positive. Anyway, I have been on Asacol for several years, taking it faithfully. Over thanksgiving, I had to travel, and I didn't want to have a hassle with meds ( vits, mainly), so I only took my immunosuppressant (I have autoimmune hepatitis, too). Well, suprise, suprise. I started having cramps, d, and associated nausea. (Plus bleeding hemorrhoids, just for fun). No signs of infection. As soon as I restarted the Asacol, I got better. I suppose my chron's had gotten worse over the years, and the Asacol was treating it all along. Is this logical?

All this is to say, Curly, that you just have to work with your doctor to find the correct pathway. Off meds is good. On meds is good. Diet is good. The real problem is figuring out what your personal treatment plan should be, which is bascially medically informed trial and error.

We chronies care no matter what you decide. remember, the forum that poops together.......(fill in ) together.
Posted 12/7/2008 3:59 AM (GMT 0)
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.

:)
Posted 12/7/2008 6:12 AM (GMT 0)
I just started the SC diet, and am hopeful I can go med free within a year or so. I have a sneaky suspicion it's the meds that make me feel so tired all the time.

As far as diet, it wouldn't hurt to experiment a little. During my last bout with pain this summer, I dropped meat and felt better within two days. I gave it a couple of months to let things heal, and then reintroduced meat. So far, so good. Also, I never thought milk bothered me. I loved it, and hated to give it up for the SC diet. But once I gave it up (as well as starch, gluten, and sugar), my constipation went away. It could just be a temporary coincidence, but I hope not! I think it would be worth it to play around with your diet a bit to see if there is a food or two that make your pain worse.
Posted 12/7/2008 7:04 AM (GMT 0)
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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