Has anyone felt like they were despairing over what to do about their Crohn's disease?

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medieval_peasant
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 1/30/2010 9:51 PM (GMT -7)   
Has anyone felt like they were despairing over what to do about their Crohn's disease? My doctor wants me to go on the TNF blockers (Remi or Humira) and I am scared to death. I have read all sorts of complimentary treatments and things such as yeast connections, mycobacterium paratuberculosis (bacteria in milk) ect., but I just throw my hands up in despair since there is no way to really know what to believe. Then there is the huge scandal and conspiracy surrounding the drug companies and how they make so much money and manipulate the FDA and research. What is one supposed to do? Has anyone felt this way? confused

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 1/30/2010 10:45 PM (GMT -7)   
Oh yeah. You have a lot of company.
 


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 1/30/2010 11:35 PM (GMT -7)   
My daughter has Crohn's. We feel despair at times but it helps to research the options and take a more pro-active approach about treatments after just listening to the doctors for years with no success. Right now she has started the anti-map treatment but it is too soon to know if it will work for her.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/31/2010 12:08 AM (GMT -7)   
I've been in dispair for the last 19ish yrs now.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 1/31/2010 12:09 AM (GMT -7)   
Yep. Map out what you have tried in the past, what has worked, what hasn't and what you are thinking. I am such a newbie here, but I've learned the moderaters and others have lots of experience and inforamtion to share.

Have you tried Asacol or 6mp/Imuran? I had an allergic reaction to the first but found remission the first round with Imuran. I'm trying for found two. Ding.

But we are all wonderfully different ....
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/31/2010 12:18 AM (GMT -7)   
I have felt despair ESPECIALLY when I was first diagnosed and I read the information on it, or during flare ups when I am reminded that it is a permanent disease and I have to learn how to control it. It's a hard thing to swallow that I will never be cured especially when one is in remission and feels great.

You should try to educate yourself as much as possible about Crohn's and alternative treatments and try to find something that is tailored to you because all of us crohnies have different symptoms and different grades of the disease. I tried Humira last April, but I was one of the 2% of the population that got severe headaches as a side effect so I had a migraine for 74 days after only being on it for 2 weeks. I have also met someone that had diarrhea 30x a day and swears by it and have friends that are doctors that prescribe it to their patients with successful results.

You have to have an open mind and have to be patient because some of the treatments especially alternative ones such as supplements, acupuncture, etc take a while to "kick in." And I can empathize with the scared to death part because I had no clue when I took the humira how awful the next few months would be for me. I'm a bit gun shy with trying remicade or the other drug like it just because I don't know if I'll have the same reaction but I'm sure sooner or later, I will have to make the leap again in hopes of remaining in remission.

I personally found that acupuncture, supplements (such as acidopholis, Vit D, multivitamins, and fish oil), and chiropractic work well for me.

Good luck to you =)
Diagnosed: 08/03/07
Meds:
lamictal 200 mg/asacol 2 pills 3x day/imuran 100mg day
Started humira 3/14/09.... pulled off due to migraine side effect.  Dealing with Migraine since then with no end in sight... 


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 1/31/2010 12:38 AM (GMT -7)   
Wow, as a migraine sufferer, I can't imagine migraines for that long ... how do you cope and what do you take?

But, yes, your advice is spot on ..... great stuff.
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/31/2010 7:41 AM (GMT -7)   
Well I personally am a firm believer in maintainence meds. You need to ALWAYS remember that you have a chronic and incurable disease, and it must be treated. Yes, we got the short end of the stick with this darn disease, but we do have it, and it must be treated at all times, or we will pay dearly for it. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/31/2010 9:58 AM (GMT -7)   
I agree with Nanners on continuing the maintenance meds. One needs to keep taking them AND taking care of their body (get adequate rest, food, etc). Not everyone has the same level of crohns and not all treatments work the same for each individual but maintenance meds are very important.

@champagnekindofgal - i didn't cope well. They gave me dialaudid in the ER and then they had me taking vicodin because they couldn't figure out what was causing the migraines since I was off the Humira. When I didn't take that, I would force myself to sleep because I couldn't function. I felt like someone was stabbing the side of my head with an icepick. Finally, the vicodin starting giving me rebound headaches around day 60, so I quit taking it. On the 74th day, my migraines stopped. I have never had a migraine prior to that medication and haven't had headaches with that intensity again since. I have a new appreciation for people that get migraines because I felt really hopeless.

Yeah the scandals with the drug companies make me sick. I try not to think about it. The Humira was $800+ A SHOT and if I would have made it to the maintenance dose, it would have been 2 shots a month. I had insurance so it was $15/ea but what about those who have no insurance? I'm sure not everyone has an extra $1600 lying around.
Diagnosed: 08/03/07
Meds:
lamictal 200 mg/asacol 2 pills 3x day/imuran 100mg day
Started humira 3/14/09.... pulled off due to migraine side effect. Dealt with migraine for 74 days and then it finally went away.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 1/31/2010 11:15 AM (GMT -7)   
I think everyone feels this way when starting Remicade or Humira.

I felt this way, but when you start getting better you forget about it ;)
25 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009

Medication - Humira, Asacol, Cipralex and Cerazette.
Past medication Remicade, Imuran
My wonderful dogs :) ~ www.poodle.is ~


riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 1/31/2010 1:13 PM (GMT -7)   
I always wonder if I'm doing the right thing concerning my 14 yr old daughters crohns. Doctors only talk about meds which I don't think is the only answer. I don't think drug companies want to cure anyone either. They just want to keep making billions on "maintaining" your illness. If they actually came up with a drug to cure IBD, they would be out of business soon. It seems its up to independent researchers to figure this out, but it's taking too long. I'm tired of worrying about my daughter's future. Diana

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 1/31/2010 1:31 PM (GMT -7)   
When I was at the doctor's last week with my daughter, there were no other patients in the waiting room but while we waited, 3 different sales representatives came in to market their drugs. We usually see at least one while we are there. I often wonder how much that costs and also the TV commercials. I can't help but think of money when her prescription coverage is poor.

hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 1/31/2010 1:59 PM (GMT -7)   
I wish they wouldn't advertise at all and I wish medical schools would start teaching more than just the food pyramid as the rule for proper nutrition. So much of what I learned from a physician is just common sense, but common sense is not common. Keep reading and you will find foods that help you and don't harm you.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes
L-glutamine powder 3 times a day
sublingual B-12 and B complex
2 T. cod liver oil
2 tsp. tart cherry juice concentrate
Multiple vitamin, 2,500mg vit. C, 1,000mg calcium mag.


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8568
   Posted 1/31/2010 2:01 PM (GMT -7)   
Yes, definitely.

Only really recently in fact. Namely, last December/January this year. I was in despair because the 6-MP I was on had obviously failed. Not only had my old symptoms come back, but I had funky new ones too. I became genuinely scared of the future. Neither biologics nor surgery remotely appealed, but I didn't see how I could go on like I was.

I'm much more sanguine now. It's amazing what a few good days will do. Tonight is the least zombie-like I've felt for weeks, if not months - no pain/discomfort and a bit of spare energy. Life is good :p

On a serious note, though, try not to buy in to the conspiracy theories about big pharma too much. If ever a real cure is found (whether it be for Crohn's, cancer, etc.), such knowledge wouldn't be suppressable.

Crohnic-Style
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 1/31/2010 4:04 PM (GMT -7)   
It is 100 percent natural to feel despair and frustration, we all have. That's why this place is so great, there has been a lot of great advice thrown your way already.

I'm currently going through the same thing, debating on what to do next and getting really scared and frustrated with any route. There are hundreds of things that are out there to treat this disease. With everything it will work for some great and some not at, in my opinion 75% of this disease is just figuring out what works right for you specifically because it changes from person to person. And although it isn't by any means easy even once you've got it figured out, it is the biggest part of the battle. Since there are so many different routes for one to take i would say just figure out what is going to be the best for you on all aspects. Advice is great on all levels, but when s@#! hits the fan it's you that has to live with your decision not anyone who is giving the advice. Go with your gut and do what is best for you, if it doesn't work right away or long term then your that much closer to figuring out the solution that will.

We would all be so lucky to be able to know the end all be all route for this road, but since nobody does then all we can do is try, through trial and error is the only way to truly figure it out.
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