Possible Ultimatum

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Crohnic-Style
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 1/29/2010 12:50 AM (GMT -7)   
O.k. so for the past 5 yrs ever since i was diagnosed with Crohn's i was doing conventional medacine. Nothing ever worked long term, I've tried everything conventionally except for Humira, Cymzia, and Remicade. Which is the next step that my G.I. and surgeon want to take is going to one of those three. Everything that i've ever tried has put me into a pathetic excuse of a remission for a maximum of 1 yr, most were a lot shorter, then i would crash and when i crash, i crash hard. I understand that things can be difficult to figure out when first diagnosed with any disease. But for me i was sick and tired of the conventional route and was looking for something different.

I have a cousin and a neighbor who both have Crohn's and both of which don't do any conventional medacine, all they do is follow a diet of things they know set them off and take very few supplements from homeopathic doctors. This sounded like the place that i wanted to be with my condition, so as of Sept. of 09' i started homeopathic medacine and went off of all my current meds ( methotrexate, prednisone). I did this because i started flaring again in June of 09' and we couldn't stop it with what i was on. By Sept. i had gnarly symptoms again and had developed a fistula. I was told by my cousin, neighbor, and homeopathic doctor alike that it would take only a few months to get my symptoms under control and get to healing and living better.

Well like i said i started homeopathic in Sept. and it's now almost Feb. And i haven't gotten any better, I'm now 45 pounds under weight and a solid list of symptoms that keep me down most of the time. I'm not only losing hope that homeopathic wont work for me at this time, but I'm also losing time at which i can try different things and attempt to get better. I work 2 jobs from March until October, then i was planning to go to school but since I'm in no condition financially orr especially health wise, i took this winter as an opportunity to try homeopathic and take time off of most everything else to get healthy.

If it comes to March and I'm showing no signs of improvement, especially from the daily debilitating symptoms then i need to reach an Ultimatum with my condition. Because there is no way that i can do what i need/want to do during this period of time if I'm still in the condition that i am in.

sorry for the novel, but I'm extremely frustrated at this point and in search of some support to help me keep my head up. And most definitely looking for some advice on what action i should take....

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 1/29/2010 1:44 AM (GMT -7)   
Crohnic-Style, I am very sorry to hear of your troubles. This disease can be one that is very frustrating and even confusing. I was very surprised to see that you have not tried any of the biologic medications before going down the homeopathic route. Normally, it seems as if most people fail one of the big guns and then try the homeopathic route before returning to a combination of both western medicine and homeopathic medicine. It is not surprising to hear that you are having the issues that you are because of the fact that you may not be really treating you actual disease and are just on a really good diet. What type of homeopathic treatments are you using? The reason I ask is I have been told so many times both here and through other aquaintinances that they are going the homeopathic route and have been doing good for a while. It makes sense that they are seeing some improvement because of the fact that their are eating a strict healthy diet that even normal people should be following. They start to have more energy and start exercising and it really looks like they are doing well. If their disease is mild, they are able to sustain this for quite a while. If their disease is moderate or worse it seems like they do good for 6 months to a year and then end up in big trouble. They problem is that their disease is still causing damage and even though their symptoms are being held in check for a time through their diet and exercise, the damage is still being done on the inside. Thus leading to typically a hospitalization or surgery or both from a large flare.
I am not a doctor but I have been told by many homeopathic experts and medical doctors that our disease is one that requires both western medications and a good diet inorder to obtain and sustain remission. The major homeopathic clinic in my area even have it posted on their website that Crohn's is one that needs Western Medication. This does not at all mean abandoning your good diet and the homeopathic techniques and things that have helped you, but it usually requires adding a combination of the 2 to you plan of action. I have been on nearly all of the medications that are out for this disease and have found all to have their pro's and cons. I would not hesitate to suggest you look into remicade, cimzia, humira, or any of the TNF inhibitors to help with your disease due to the fact that you have a fustula. That shows that what you are doing is not treating the disease and it is causing damage. The TNF medications can help heal the fistulas and prevent new ones from developing. You may have to try more than more to find the one that works for you.

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/29/2010 5:17 AM (GMT -7)   
You hit it on the head tsitodawg! I thought that I would never be on humira or any other TNF drug, but quess what here I am today on Humira. I was even told that my disease was so mild that I would never need surgery. Well, I did.
i will keep trying every drug out there until I find one that will keep me in remission for a long time.
Keep fighting!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 1/29/2010 6:44 AM (GMT -7)   
Hi CrohnicStyle,
You didn't really say what the homeopath has you taking.Also,what type of diet are you on? Have you considered the SCD diet. (Specific Carbohydrate Diet) If not, google "Breaking the Vicious Cycle" There is a ton of info about it. My daughter and many many others are on it. It is no grains, no starches, no sugar and no lactose. Very hard at first, but many have been in remission for years with this diet. Actually, my brother had UC and had constant diarrhea for the last 6 years. He finally gave in and tried the diet and within 2 weeks, had his first solid bowel movement. I know SCD does not work for everyone, and I am not an expert, but it may help you. Diana

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/29/2010 7:28 AM (GMT -7)   
I, like tsitodawg, am a big believer in western meds and some natural stuff. But I learned a very hard lesson in what happens if you do not treat this disease properly. I had two flares when first diagnosed and then went on to have a medicine free remission for 20 years. During that 20 years I ate pretty much what I wanted. What I didn't know was while I was busy getting on with my life, the Crohns was still in there doing its damage on a microscopic level. My remission ended abruptly with an emergency surgery because I was completely obstructed. I am also a firm believer that meds and diet should be considered as complimentary of eachother. I personally follow a low residue diet all the time, and that works best for "ME". Another diet option is as mentioned above the SCD Diet. But this diet is not for everyone, for it to succeed you have to strictly follow it. But some folks have had success with it. But whatever you do, please get back on meds, then find a diet that works best for you. Good luck and keep us posted.

Hugs
Gail*Nanners*
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"*

j_web
Regular Member


Date Joined Nov 2009
Total Posts : 205
   Posted 1/29/2010 7:41 AM (GMT -7)   
Chronic-Style - I tried to avoid the biologics too, but after many months going downhill there came a point when I felt so sick, and had lost so much weight, that I did not have a choice any more. If you've been on your current treatment since September and not feeling any better (in fact, sounds like you're worse if you've dropped all that weight), maybe it's time to try something new - now.

I hope you get to feeling better soon.
CD since July 2007 - prenatal vitamins + extra vit. D, vit. C and iron, fish/flax oil, probiotics

Following excellent Omega-3 diet as per James Scala's 'The New Eating Right for the Bad Gut' - got me out of a flare.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/29/2010 7:57 AM (GMT -7)   
Not sure if you've had surgery ever? Maybe it's time to consider that. Some people have long remissions afterwards.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 1/29/2010 8:08 AM (GMT -7)   
I am big believer in doing whatever it takes to get better. This disease is very individual and can vary wildly. Plus, comparing yourself with others might not be the healthiest thing to do. Everyone's experience of this disease is some what different.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 1/29/2010 8:18 AM (GMT -7)   
I would worry that waiting until March would put you in a dangerous position...you've already lost 45lbs and have (from what I read) no quality of life. If your condition deteriorates more, you might not have any say in the treatment path.

This disease is so different for everyone I really wouldn't expect what works for someone else would work for me, too. I've tried many alternatives and have always gone back to meds...but that is ME.

Quality of life should be a factor in any decision.

Crohnic-Style
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 1/29/2010 3:21 PM (GMT -7)   
Thank you so much to everyone who has responded, it means a lot to have your support and advice. Sorry i left out a few details such as the treatment that is being done right now. My homeopathic doctor currently has me on a no wheat, dairy, corn, rice, and bananas diet. Then i just take the Vitamins and other supplements that vary and change from visit to visit. I have the book for the SCD diet but the fact is the diets that i have tried thus far and the one I'm currently on, although it is good because its healthier, my symptoms have never changed do to diet which makes me think that diet isn't the keystone (as it were) of what i need to do.

I haven't had surgery yet and I'm afraid to, my surgeon told me that because of the position at which my fistula is i have i higher risk of damage. Damage such as never being able to control my bowels ever again...

I was hoping that natural alternative routes would be enough to get my body digesting properly and healing. I was told that if my body is digesting properly and my symptoms are in check then the fistula would heal on its own. Also i am afraid to get into doing the other medications such as humira, cymzia, and remicade, because they are a long term commitment. I'm not liking the things that i hear as far as side affects and other conditions that are caused because of the medication itself. Also they are very expensive and although its the very last thing on my list of concerns to make a decision when it comes to my health. It is definitely a challenge to deal with...

hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 1/29/2010 5:07 PM (GMT -7)   
An all-out flare requires an all-out assault. If I had to, I would not flinch about going back on pred. to knock back a flare. Knowledge of how our bodies work and digest nutrients helps us avoid aggravating the situation. Please always remember, that the food you are eating is just as important as the medications. You will get lots of great info here. These people have experience with the whole range of meds and will be honest. I'm wondering if the homeopathic doc was an MD. Welcome to Healing Well!
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.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/30/2010 9:10 AM (GMT -7)   
Well I think with the damage you already have you need to accept the fact that you have a chronic and incurable bowel disease. If you want to get your life back, I personally think its time you take back control and get on those longterm meds. You are going to wind up even more ill if you do not start taking care of your Crohns. I would hate for you to have to have emergency surgery like I did. It was a very traumatic and painful way for me to finally wake up and realize that this is a disease for life, and needs to be treated with meds for life. JMHO Good luck!
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"*

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 1/30/2010 9:23 AM (GMT -7)   
Crohnic-Style, I would like to suggest as hldwodrgs; try to calm down the flare with prednisone. I did so 2 years ago, this was the only medicine my GI would let me have, due to a kidney cancer surgery the same year, he didn't dare to put me on Remicade or Humira, these medicines may lead to serious side effects which could result in me getting my cancer back. When I was tapering prednisone and was on a low dose, my symptoms got back again. My GI wouldn't let me have ANY Crohns medicine except for a shorter (3 months) prednisone treatment starting at 40 mg, so when I was done with that I was left to myself. And had increased diarrhea.

At that moment I didn't know what to do. I searched the internet and by an accident I came over Low Dose Naltrexone. It's a western medicine, it's called LDN for short, and it's helping many people having Crohns or U.C. or other autoimmune diseases. I got painfree the first day after I started using it, my diarrhea was gone within 2 weeks, and so was the obstructions, the anemia, the cramps and vomiting. Have used it for more than 2 years, and it's great. No side effects for me. But a lot of energy. All my fatiques are history. I just couldn't believe this when I first started.


read more on LDN:
www.ldninfo.org
go to www.youtube.com and search for NALTREXONE and you'll find a LOT of interesting videos from doctors and LDN users on what this medicine is. Look at the video of the English famous dr.Chris Steele (the equivalence to dr. Oz in the US).

LDN is making the immune defence stronger, it's able to increasing our endorphins a lot, this leads to that our body will be able to fight the inflammation itself instead of attacking the tissue of the intestines. I know people that have used LDN and got their fistula healed and the disease's symptoms have gone. Most of these people are now supporting each other in a yahoo group named LDNandIBD, there are some hundred members there, some of them are on a diet and using LDN, some just have regulated their nutritional intake to what suits them without following any diet which often could be too strict for all.

The Specific Carbohydrate diet is one of them that people combine with LDN. I personally am on a gluten free diet and LDN, other is following the book that James Scala has written (read j_webs) post. Other again are eating whatever and are using LDN in combination with omega 3, vitamin D and homeopathic remedies. Other are using Asacol with LDN or Pentasa with LDN. These could be taken in a combination.

If you're able to use prednisone for a while to calm down the flare, prednisone could be used with LDN only when you're down at 10 mg pred. At bigger doses of prednisone you may find that LDN is not helping, LDN is doing the opposite to the body, it's boosting the immune defence, while prednisone is suppressing the immune defence.

LDN is not FDA approved, and believe me, I never think it will be, it's a generic drug, it has been used in doses from 50 mg and more for 30 years on humans, the medicine companies will not earn a nickel to do new research on it, so even if some company decided to use million of dollars to find it work for a lot of autoimmune diseases, they will never get back the money they put into the trials. LDN is taken in doses between 3 mg to 4.5 mg each day for Crohns disease. You could also do a search in here to find more posts on LDN.

Vitamin D, Omega 3, zink, magnesium, calcium, B-total, Vitamin C and a gluten free diet. /Bee

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/30/2010 9:24 AM (GMT -7)   
I would also suggest that surgery during a flare reduces your chances of a long remission whereas if your diseae can be brought under control BEFORE surgery, even if you need to have surgery, your chances of long term remission after surgery are greatly increased. And I sure would stay on maintenance meds after surgery to increase my chances of a long term remission.

My resection was and is termed an "emergency" resection - BUT while I fully obstructed and possibly perforated (local surgeon said yes, I don't remember Mayo surgeon mentioning) I refused surgery locally and was hospitalized for 6 weeks on IVs, an NG tube and NPO. Then I flew to Mayo and had surgery right away the next day. I had that 6 weeks of emergency healing which I feel and believe contributed GREATLY to my 20 year remission.
My computer says I need to upgrade my brain to be compatible with its new software.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 1/30/2010 11:20 AM (GMT -7)   
No one thing works for everyone.   So please focus on finding some treatment that works for you.  
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Crohnic-Style
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 1/30/2010 7:07 PM (GMT -7)   
The reason that prednisone is not on the list of my options is because it hasn't worked for me in the past...

I would be slightly (very slightly) more comfortable with surgery if i was under control and in a state of remission. Although it still scares me.

I'm also a person who is willing to do anything to wage my war against Crohn's, but the fact that conventional medicine has never worked long term in the past.... And the fact that I'm afraid to start the long term treatments of the other drugs. I don't want to go down an endless road of having to take more and more medications as i develop more and more health problems because of the 'treatment' that I'm doing for Crohn's. I want to have as simple of a solution as possible for my health that's all. I'm aware of the fact that this is my situation for life, and because it is so different from case to case, that's all I'm doing is trying to find whats best for me personally.

Buut i guess what it comes down to, is that if worse comes to worst and i need to go back to conventional medicine. I'm just scared to do so because of all the negative things that I've heard about them, and I'm just looking for reinforcement on a knowledgeable experienced level that there is hope of a good quality of life on those medications....

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/31/2010 8:37 AM (GMT -7)   
I have been in remission for the past few years and am maintained solely on Asacol.
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"*

Crohnic-Style
Regular Member


Date Joined Jan 2010
Total Posts : 24
   Posted 1/31/2010 10:06 PM (GMT -7)   
That's great to hear, it must be nice to have a simple solution.

I'll be there some day, but not yet we'll see what happens i have a pretty crucial appointment this week with my homeopathic. He is bringing in two other alternative homeopathic doctors, and i'm stoked to see what they have to say. It will be very crucial in my decision making of the next month.

Buut thanks to everyone for the support, this is a serious crazy time in my life and i'm glad to be here with all of you. Your knowledge is comforting and important to my recovery!

Ankylos
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 2/1/2010 12:23 AM (GMT -7)   
Just to add to BeeSting's notes- LDN need not receive FDA approval; naltrexone itself is approved by the FDA, so any doctor may prescribe it for any malady they so choose- that delightful "off-label" thing applies.

There is one study to support its use for management of Crohn's disease; the group is currently performing a larger study, if my understanding is correct.

Low-dose naltrexone therapy improves active Crohn's disease.
Smith JP, Stock H, Bingaman S, Mauger D, Rogosnitzky M, Zagon IS.
Am J Gastroenterol. 2007 Apr;102(4):820-8. Epub 2007 Jan 11.

One other group published a short note in using naltrexone in the management of Crohn's in a pediatric patient. I read it; several doctors signed on to it, noting it was effective.

Low-dose naltrexone for treatment of duodenal Crohn's disease in a pediatric patient.
Shannon A, Alkhouri N, Mayacy S, Kaplan B, Mahajan L.
Inflamm Bowel Dis. . [Epub ahead of print] No abstract available. PMID: 20014017
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 3:55 AM (GMT -7)
There are a total of 2,735,789 posts in 301,336 threads.
View Active Threads


Who's Online
This forum has 151436 registered members. Please welcome our newest member, george252.
144 Guest(s), 2 Registered Member(s) are currently online.  Details
UC prisoner, jared16


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer