Daughtes with Crohns

My oldest daughter was diagnoised with crohns three years ago, by the time she was finally diagnoised she had dropped from 95 lbs down to 63 lbs and we ended up in the emergency room were the ER doc finally gave us a tenative diagnosis. After crohns was confirmed by a G-I we began the traditional medications without any benefit. The G-I told us that my daughters case was severe and started to talk about other options ie: remicaid ect... A close friend referred me to a doctor in vermont who was using a unique approach to treat crohns. After meeting with the doc we decided to follow his recomendation. My daughter was placed on wellbutrin and began to go into remission within the week. My daughter has seen her crohns symptoms resolve as well as her arthritis pain. I have seen three other crohns patients since my daughter who have gone on the wellbutrin and gained remission. Wellbutrin is a antidepressent which also has been shown to reduce TNF (tumor necrosis factor) which is what remicade does. If anyone is interested and has any questions please fell free to ask. Also the immediate release wellbutrin seems to work the best and I believe that the difference is similar to asocal and pentasa. They are the same drug but are just released at different rates. The wellbutrin SR (sustained release) caused my daughter to have a flare so we switched back and saw immediate improvment. The final benefit is that the wellbutrin costs approx. $35 per month. Best wishes to everybody!

UBOB

Thanks for sharing UBOB and welcome to the forum. I am glad that your daughter has been able to acheive remission. I have never hear of the drug in question at all. Are there any side effects with the drug? Is it something that needs to be taken for the rest of ones life?

ubob,
Glad to hear she is in remission.
You will find plenty of info and support for you and your daughter on this site.
:welcome:

Wellbutrin

All drugs have side effects but unlike most wellbutins are minimal if any, my daughter initially had difficulty sleeping as well as a fine tremor both of which resolved. It does not cause liver damage, kidney damage , cancer or tuberculosis as do many of the other crohns meds do. You may have heard of wellbutrin under anothter name ie: Zyban or Buproprian. Do you have to take it the rest of your life, this is the million dollar question! The G-I, that we saw at Dartmouth told me that when a crohns patients is in remission that if they discontinue their meds that approx. 40% will flare and the worse part is that generally the med which kept them in remission will no longer be effective. This makes for a tough descision. I would love for my daughter to be off all meds but is it worth the risk? At this point no.

UBOB

Hi UBOB

:welcome: so glad she is in remissoin (((((hugs)))))))

Welcome UBob - and thanks for the information!

Welcome

I find what you said interesting, I have never heard of welbutrin doing anything for crohns. The fact that im currently on it really made this catch my attention.
I am on the generic SR version, so perhaps that is why I am so miserable..

Anyway, thanks for mentioning this!
Justin

Hye Ubob,

Glad to see you have joined us on the forums. I hope you have as much fun, support etc. as I have had from the site.

Hey UBob, welcome to the site, its nice to see a father taking such an active interest in his daughter! and her health... Im a bit jelous!
hope you like it here, and we see you around.
Valentina

Hey Ubob,

welcome to crohnsforum

yeah, I've heard of Wellbutrin XL being used for crohns before, but its an antidepresant and comes with some serious side effects for some people, some more severe then Remicade, thats why my doctor didn't suggest it to me, he thought the risk was too great for me...

however, you have a point, crohns does cause me to have thoughts of depression, even thoughts of suicide at times, all has to do with a chemical inbalance my doctor said.. The majority of the time I am really happy and silly, while other times I just go on and on and on about stuff, which tells me I am seeing signs of depression again, but my doctor won't give me anything for it because he feels the medications to treat it are too much of a risk for me.. I am so glad it works well for your daughter though maybe someday they will let me treat it as well.

take care,

wellbutrin and side effects

Bubazoo I find it amazing that your doc said that wellbutrin has more side effects than remicaid or any other drug for that matter. Wellbutrin does not cause kidney or liver damage, it does not cause cancer, tuberculosis, bone degeneration.It is safe to use during pregnancy and has a twenty year track record for safety. It is also used under the name of Zyban to help people stop smoking. This is by far safer than most if not all crohns drugs that I am aware of. That being said all drugs have side effects, my daughter initally experienced insomnia and mild tremors which resolved over a short period. Their are other listed side effects but they do not appear to be very common. Remicaid on the other hand however has the potential to cause cancer and lupis like auto immune disorders
Good luck

Ubob

Hi UBob welcome to the forums.
All the best to you and your daughter

hey u bob
welcome to the site im glad that your daughters in remission all the best

kate

hey Ubob,

oh I know, thats just what my doctor said...honestly, I have no idea one way or the other, I am not a medical doctor and have no experience with the drug at all, I really don't trust my doctors judgement on that anyway, however at the present time I have no other choice.... He pretty much told me, I have to do whatever he says or he will refuse to trreat me.. pretty crappy attitude to have towards a patient, he has this attitude like "you do what I say or else no treatment" acting like he is "god" or something, it really bothers me, arrogance in anyone bothers me, I know, but from what I was told by my primary physician, he is the only GI on this side of Indiana, so I don't have a choice if I want to live so to speak alot of his treatments I don't exactally agree with, like this Asacol stuff he insists I be on knowing all too well this drug isn't doing a darn thing for me, would rather be on pentasa or some other drug related that would work better then asacol, but as I said, I am not a medical doctor so I have no experience in any of this really, all my knowledge is from what I have read online (shrugs) otherwise I know nothing, hehe

its like with my Fistula though, he knows I've had it for 5 years now, but refuses to even discuss the issue.. all he says about it is "go see a surgeon"..he doesn't even listen to the fact that I have had 5 rectal surgeries so far on the thing and its still not closing up, he just ignores it totally... same with my remicade treatments, I told him I get the flu afterwards, and that the drug only works for about 1-2 weeks before wearing off, almost as if my body is forming antibodies against the drug, he just says "tough crap deal with it like a man" I mean, thats literally what the guy said to me...

yet, when my sister, who went in because her primary found a single white mark on her large intestines, he came to visit her in the hospital, heald her hand in the hospital, called her daily to see how she was feeling, etc etc...I was thinking "gawd what an arrogant you know what" hehe.. The nicest he ever was to me, was the day my sister went to my appt with me.. I mean really, I've had symtoms for 9 years in cronic pain from the throat to the anus, yet he only agrees to see me about once a year almost like he has to or something, no emotion towards me or my condition whatsoever, its like, gawd, what a typical male, sheesh.

but that is my story as to why I decided to go on SCD, Makers, and reading as much as possible about crohns....because if my doctor won't help me, the only one I can count on is MYSELF...so...I started reading everything on crohns I could get my hands on, and I still don't understand the science behind all this, but I rely on what I read more then my own doctor these days because he won't take the time with me. thank goodness for my surgeon though, without him I would still be crawling on my hands and knees everywhere living my entire life in the bathtub......

take care, and God bless...t...

Bad GI

Sorry to hear about the problem with your Doc. Normaly you would fire a doctor like that, but it doesnt sound like you have a choice although Im suprised that heir are no other GI's around. As a patient the ultimate decission is up to you, dont ever let a doctor try to force you to do what you dont want to! In regards to the wellbutrin if you have a desire to try the correct type it should be as easy as going to your primary care provider and letting him/her know what you want. If it were myself worse comes to worse I would buy it from a internet pharmacy, I no that many people would dissgree with me on that and I understand their concerns but it is a option. The doctor who treated my daughter had a pnone consult with me before I had taken my daughter to him and pleaded with me to hold off on the prednisone that had just been prescribed for her. He told me that the wellbutrin was a free lottery ticket and that we had nothing to lose and everything to gain. He was right, it gave my daughter back her life! Best wishes

UBOB

Hi UBob

welcome!!!
Ktxx

Hey Ubob,

well, just depends on the internet pharmacy, there is too much spamming going on in that area, and I would not trust a pharmacy that would not allow me to get that medication without a prescription, because the medication could be tampered, or the wrong medicine entirely that could make me sick, or worse, have heard too many horror stories about that over the last couple of years.. cybercrime on TechTV had a whole week special on that very subject once.....

but yeah he is the only GI here in Warsaw, the rest are up in Ft Wayne or South Bend, which are 2-3 hr drive for me at least, which is an issue for me seeing as how I cannot drive a car, and I don't even have family in this state I live in at all, so even going out of the city limits for me is a big issue.. Here in town, I can take a cab to wherever I need to go, for $6 per way, which is steap but I have to do it to get anywhere, most of the time I just walk though, depending upon if I'm up to it or not.. which unfortunately limits my physician choices... I keep praying I'll meet some rich lady with a beautiful personality who makes enough so I don't have to work, and can go back to school, start drivers training, all that good stuff, but, its just a dream, in reality my choices are limited and I struggle just to get by like everyone else