Are meds the only answer?

[ThePriest]

Hi everyone,
I am new here.
I am a 30 year old male. I was diagnosed with Chrons about 10 months ago after excruciating abdominal pains led me to the Emergency Room and then immediately to the operating room. I had severe inflammation that led to a perforation in the ileum, and they had to remove about 60 cm (24 inches) of my small intestine. I was hospitalized for a week (which was hell), but I did not receive any treatment until this point, for various reasons.
I am generally very skeptical (and perhaps a bit paranoid) about conventional medicine (drugs, vaccinations, etc..), and my instinct is to avoid them as much as possible. (I acknowledge that this may have been to my detriment, since my condition could have been discovered earlier had I been examined more thoroughly in previous years.)
In any case, my only response to the diagnosis to this point was consulting with friends who are knowledgeable in natural healing, alternative medicine, macrobiotics, etc...and I have tried to incorporate some of their suggestions into my lifestyle - mainly in terms of changing my diet and taking some supplements that are supposed to help my digestive system.
This week I had a colonoscopy (for the first time) and the doctor said that my small intestine is still inflamed. He suggested that I begin treatment with Imuran, beginning with a small dosage (50 mg) and then working my way up to about 200mg. As I said above, I am generally not very fond of the idea of drugs, and reading some of the reviews online from some of the people who used Imuran makes me absolutely terrified of it. It seems like the potential dangers - things like cancer, liver disease, skin diseases, hair loss, etc...may far outweigh the benefits.
Of course, the doctor warned me that it is essential to treat my condition, since it can potentially get much worse and effect other places throughout the digestive system. At the same time, I am concerned about the long-term effects of regularly taking a drug like this - as well as all of the vaccinations that I will need - on my overall health. I understand that this drug has helped some of you alleviate the daily discomfort involved with Chrons, but the discomfort is something I can live with if I have to. I am more concerned with my long-term health. (For example, will I will feel better for the next couple of years, but in another 10 or 20 years I am likely to end up with another serious condition that is a byproduct of the drugs?).
So the fundamental question here is whether treating my condition with Imuran is absolutely necessary, or are there natural alternatives that can be just as effective without the added risks that are created by the "side effects" of the drug, or perhaps is there another "safer" drug that is not as damaging to the immune system or the body in general.

I also fear that Chrons - like many other diseases - has a psychological/emotional/spiritual root cause to it, and that medications fail to address these issues - which have a direct impact on our physical well-being.
And I don't want to create dependency on a drug, and not address the root cause (which may be related to family issues, stress, trauma, etc..).

Previous conditions: Asthma.
Current conditions /symptoms (post-surgery): General weakness / loss of energy and stamina, anemia, numerous BMs every day, lost about 20 pounds (mostly while hospitalized, but I haven't been able to put it back on).

I'd appreciate any advice you guys can offer in this matter. I need to make a decision, but I also need the peace of mind that I am making the right decision. Right now I am torn, and it's only stressing me out.

I have a feeling most of you will think I should listen to the doctor, but if that's the case please tell me WHY. Am I being too paranoid? Should I not be worried about the long-term negative effects of this drug that I have seen posted in other forums?

I apologize for being long-winded, but I just needed to get it all out on paper (or on the screen ).
If you read this far, then I am sure you have something to say.
So go ahead. Hit me. illowfight:

 

[SnowDay]

Welcome to the forum, friend. When it comes to the issues of healthcare and medicine i try to be as objective as i can. My parents are very anti-conventional-medicine and they drive me nuts with their preaching, talking about it like it's the devils nectar. I try always to be open-minded give things a chance before condemning them.

I think conventional medicine is often a very valid and sometimes totally necessary route to take. I also think that many people are too quick to reach for the quick-fix and say ''Aw, i couldn't be bothered to make sacrifices and change up my lifestyle, gimme a pill doc''. Another thing i often find is that most conventional courses of action are focused on the management of a condition, rather than the cure.

I understand completely where you're coming from with your skepticism of drugs, vaccinations, etc. as i am in a similar boat based on my own personal experiences. I think that it is certainly an option to explore the holistic/natural route to try to find some answers to your troubles before going the conventional route. There is also often a lot of pressure on a person to go the conventional route and it's difficult when people try to make you feel like it's your fault you're sick because you won't do everything a doctor tells you.

Having said that i am by no means an expert on crohn's, nor do i claim to be an expert on health at all, and i can't answer your main question of whether treating your condition with Imuran is absolutely necessary. I have however been through my share of health troubles and have researched (particularly) digestive problems/skin problems extensively. I think that most conditions can be vastly improved with proper diet, exercise and sufficient care-taking of oneself.

Hope this helped a little anyway and you will for sure at least find some support and psychological relief just from joining the community here .

-Jude.

 

[ThePriest]

". I think that it is certainly an option to explore the holistic/natural route to try to find some answers to your troubles before going the conventional route. There is also often a lot of pressure on a person to go the conventional route and it's difficult when people try to make you feel like it's your fault you're sick because you won't do everything a doctor tells you."

Exactly, Jude. The question is how long can I "hold out" in my insistence on the natural/holistic approach - it's been 10 months now - without clear results, until I have no choice but to succumb to the pressure? (Like you I also have plenty of pressure from people in my inner circle who are adamant that I must stay away from these drugs.) ?!?!

 

[handle]

Hi ThePriest,
I think Jude put things well.
Crohns often follows a pattern. When it perforates the ileum and necessitates a big operation, then that pattern is a more severe type. It is more often the milder patterns of Crohns that may be treated solely with holistic therapies.
Imuran is a very good drug for Crohns. It is relatively safe and effective. I would recommend that you start with 50mg and progress slowly from there. If there are any other treatments that assist you, then add them to this.
People who are adamant that these drugs need to be avoided are those who have not felt the vicious sting of this condition! It is not a condition that does well without effective treatment. A combination of treatments is usually found to be necessary.
Don't feel pressured by people who are only guessing as to what may work for you, and who do not have the condition or understand it. You really need to get that inflammation under control. The damage can become irreparable. Sadly, it is not a disease to toy with.
I wish you good luck on your journey. Take the help wherever it comes - from good doctors, and reliable sources.
All the best.

 

[crazycanuck]

I agree with Handle a lot there. I have been on Imuran for a while now and with no real side effects from it. You'll have a lot of blood work done and you increase it over time which only adds to the safety of its use.

My disease apparently got worse (according to my new GI) because of poor treatment which basically left most of my intestines untreated for a couple of years. I basically forgot what it was like to live without pain almost all of the time and without being in a bathroom 10+ times a day but Imuran changed that all for me and only ever stopped working on it's own when a couple extremely high stress events happened for me and that has led to Remicade.


Also remember when reading online: People are much more likely to go though the effort of posting something when they are unhappy than when they have something work.

 

[Sybil Vane]

I noticed you said that you didn't want to be "dependent" on a pill. It's not a dependency issue when you need a medication to stay healthy. I consider it akin to putting oil in a car. There's nothing "wrong" with the car because it can't drive without oil. Dependency issues are more attached to emotional functioning. For example, if you feel you can't get through your day without narcotics and you're taking them when you don't have pain, that is a dependency issue (in my opinion). Imuran doesn't alter you in any way and doesn't make you a weak person for needing it.

I hate to say it, but I think you are on the road to feeling like a failure if you think this is a mind over matter condition. It really isn't. If you don't treat the Crohn's, you're going to end up having surgery after surgery and being in worse shape than when you started. I've had 3 surgeries in the last 3 years and my stomach is so messed up that it's very depressing. I have daily abdominal pain just from the surgeries. I used to feel like a failure because I couldn't achieve remission and still can't (even with Remicade and Imuran), but it really is out of my control and that is something I've come to terms with. I can't will away the Crohn's and believe me, I've tried.

I think it's perfectly rational to give alternative meds a shot, but you may need the Imuran to give you that jump-shot into remission and perhaps you'll be able to get off of it later on and the alternative meds will keep you into remission. At this point, I would worry about losing more bowel and developing short-bowel syndrome.

I really hope you're able to achieve remission in any way possible. Please know I have my fingers crossed for you!

 

[Sybil Vane]

I also wanted to mention that I had pressure from my friends to not use heavy-duty pharmaceuticals. I ignored them because it really is rude for people to question what your doctor is advising. And believe you me, if they were in a similar situation, they would be begging for Imuran and relief.

 

[ThePriest]

Thanks guys for your advice. It has been REALLY helpful, hearing it from people who have personal experience with this.
I started getting B-12 injections - which are literally a PAIN IN THE BUTT (Is there no other way to for them to be administered?!)...as well as my vaccinations.
And as of next week I will probably start taking Imuran. I will also try to add some natural remedies to my diet, which may help counter the effects of the drug.
I will keep you posted as I continue on this journey.

 

[mnsun]

I was diagnosed 7 years ago in a similar fashion. I had a resection (18cm if I remember correctly) at the terminal ileum, but I also had an appendectomy as my intestines was inflamed and wrapped around it. I stuck to the meds (imuran & pentasa) for a year and a half. The side effect I experienced was just feeling more run down, but I was going through a lot at that time. Later, I tapered off over a couple months because I just didn't have many symptoms and the meds didn't seem like they were contributing. Furthermore, I didn't have symptoms before diagnosis and longterm usage of an immunosuppressant didn't feel right for me.

Since then I've tried many supplements and lifestyle changes which I've summarized in my post under Your Story>Success Stories>MY Supps for MY Dis-ease. Looking back, I think it probably was a good idea to take the imuran and pentasa in order to stabilize after the surgery. Though I never had more than 2 BMs a day, and I've never lost weight like some people have unfortunately described. However, during that time I reevaluated a lot of things, and I completely concur with your thoughts on the mind body component as well as the inadequacy of modern pharma for treating most chronic dis-ease. Excercise, stress management and artistic expression seem to help on many levels.

Diet and supplements are the greater part of the the solution in my opinion. You have to observe your own diet and decide your own safe/caution/danger foods.

Also, LDN seems to work for a lot of people, and it can be used in conjunction with most pharmaceuticals, including imuran. What's unique with LDN is that it is such a small dosage and it has been shown not only to halt progression, but reversal of intestinal damage has been documented.

I, for one, am never taking another vaccine. However, the last time (maybe the only time) I ever got the flu was probably 20 years ago. Granted, I'm completely positive there are effective methods to immunize individuals on a genetically individual basis. The one size fits all immune systems approach, which doesn't factor in allergies to preservatives and adjuvants while comboing multiple strains of (often outdated)flus (or the MMR)..., is outdated and irresponsible, but highly lucrative. The revolving doors between industries and governmental bodies that promote vaccinations discredit themselves. Search my post in the Support Forum>Thoughts on Flu Shots for MY OPINION. I would also urge you to confirm whether the B12 shots contain preservatives, though preservative free ones may be costly.

Surf around the site as you'll surely find all your questions addressed in depth. Though your intimations on spiritual aspects may need elaboration...

 

[archie]

I so know where your coming from with your battle about taking drugs or not and I totally agree with all the advice above. Im not against taking medication but that said one if the reasons for me having surgery was the same as you a perforated bowel. I so far have not been advised to take anything as I don't have any active disease however I would take it if advised. I think the risk of having further damage to your bowel could be detrimental to your health anyway so therefore probably out ways the risk of potential side effects from the drugs. It is a tough decision to make so good luck with your choice but one thing for sure don't let anyone else ie your circle of friends who don't have the disease influence you it is your health therefore your decision. Good luck

 

[diamondude]

First, find the the best doctor in your area, you need to be monitored at least every 3 months. The doctor will know what to do in your case to have it under control but medications are necessary even for maintenance. I have Crohn since 1987.

 

[Jessi]

Hi Priest and welcome to the forum.

I hope you've had a chance to look around the forum. Since you're leaning towards Imuran, check out our treatment forum for Imuran patients.

But we also have a few people going the holistic route and find that it works for them. You can read up on one of our own Crohnies and her holistic journey.

I hope you find what works for you. Good luck. :hug:

 

[mnsun]

I would add: diet is probably more important than supplements, as a messed up diet will delete some of the benefits of many supplements.

I've found a SCD Lifestyle podcast that covers the spectrum of IBDs and their respective supplemental/dietary approaches. This is a very good introduction to dietary considerations, not ALL of which I agree with, but still positively enlightening.

Go to scdlifestyle.com, scroll halfway down the page on the right side, and type into the search box: Podcast 29 Leo Galland

 

[seaofdreams]

I believe it's so incredibly important to do as much research and investigation into your disease and any medications as you can so that you make make the most informed decision possible when it comes to treatment. It's also really important to remember that what works for one person won't work for another and it's all about finding the perfect balance of things to suit you, your lifestyle and your personal values and beliefs but above all - to help you feel better and help your quality of life.

On that note: so far on my personal Crohn's journey I have spent years doing online research, reading medical papers and journals, speaking with fellow Crohnies, speaking with auto-immune disease, Crohn's disease and gastroenterology specialist, experimenting with my own medications, diet, holistic "treatments" herbal supplements and so much more. My personal experience with treatments is that a combination of medications, supplements and a restricted diet works really well for me and I'm very happy with my quality of life.

Also on another related note: In the past I was on Imuran and I had a very good experience with it. I had no side effects at all and it helped reduce my symptoms so much. It literally changed my life for the better. In fact, I'm currently in remission but the methotrexate that I am on gives me terrible dizziness, nausea and fatigue so I'm seeing my GI in a month to discuss dropping back down to Imuran.

 

[Gutrot]

Answer

Are meds the only answer?

- No.

 

[ankspond]

I would advise to be very careful in following the indications of people who are not qualified in medicine, or have not made proper studies. I am not discouraging the trial of alternative medicine (I am myself trying a diet that has proclaimed benefits but is in the end only pseudo-scientifically founded), but I would suggest you try alternative medicine only in addition to proven treatments that can reduce your symptoms. The fact of the matter is that taking a gamble may again lead a patient to the surgery room, which one cannot make infinite trips to. So attacking the disease with medication and thereby putting it in some control would be most advisable imo.

 

[ThePriest]

Are meds the only answer?

- No.

If you have insights to offer on the topic, then please elaborate.

 

[Gutrot]

.

 

[Gutrot]

I would advise to be very careful in following the indications of people who are not qualified in medicine, or have not made proper studies.

Good stance, so I guess your advice on this forum will be rather limited, since you aren't this person's doctor and have done no examination on them personally, as a doctor.

I am not discouraging the trial of alternative medicine (I am myself trying a diet that has proclaimed benefits but is in the end only pseudo-scientifically founded), but I would suggest you try alternative medicine only in addition to proven treatments that can reduce your symptoms. The fact of the matter is that taking a gamble may again lead a patient to the surgery room, which one cannot make infinite trips to. So attacking the disease with medication and thereby putting it in some control would be most advisable imo.

Oh that didn't take long, there's an indication from someone not qualified in medicine and not with this particular patient, the very thing you were warning about.

 

[Gutrot]

If you have insights to offer on the topic, then please elaborate.

Maybe try some online resources, see if you can get in touch with anyone, it's a good starting point.

I would suggest to become your own fact checker and skeptic.

Look at the quality of life, and implications, of people who have chosen various options and make our own decision.

 

[KWalker]

Medicine is not the only answer. I'd bet with some of the medicine they put us on, although it might bandaid our crohns, it destroys the rest of our body. I've been medication free for about a year (maybe a little more) and I feel great. I don't have any sort of diet, but I've always been one to eat healthy. I would probably even bet that some of the stuff (meds or supplements) they try to give us our placebos.

 

[stratford]

Also remember when reading online: People are much more likely to go though the effort of posting something when they are unhappy than when they have something work.

I agree 100% with this statement.
When i researched natural alternatives online i found most people who posted were struggling with various issues.
Due to natural products not having proof (FDA evaluation) anyone who posts about success with them was generally seen as a spammer or salesman.

I'm very thankful to the people who took the time & effort to post of success with natural products.

 

[stratford]

Medicine is not the only answer. I'd bet with some of the medicine they put us on, although it might bandaid our crohns, it destroys the rest of our body. I've been medication free for about a year (maybe a little more) and I feel great.

Same here thankfully :thumright:

 

[ankspond]

Good stance, so I guess your advice on this forum will be rather limited, since you aren't this person's doctor and have done no examination on them personally, as a doctor.

You misread what I said. I advised the person to follow the indications of their doctors, not mine.

 

[Gutrot]

Thanks guys for your advice. It has been REALLY helpful, hearing it from people who have personal experience with this.
I started getting B-12 injections - which are literally a PAIN IN THE BUTT (Is there no other way to for them to be administered?!)...as well as my vaccinations.
And as of next week I will probably start taking Imuran. I will also try to add some natural remedies to my diet, which may help counter the effects of the drug.
I will keep you posted as I continue on this journey.

Yes there is another way, under the tongue, in the form of drops.

The sublingual route, in which B12 is presumably or supposedly absorbed more directly under the tongue, has not proven to be necessary or helpful, though there are a number of lozenges, pills, and even a lollipop designed for sublingual absorption. A 2003 study found no significant difference in absorption for serum levels from oral vs. sublingual delivery of 0.5 mg of cobalamin.[62] Sublingual methods of replacement are effective only because of the typically high doses (0.5 mg), which are swallowed, not because of placement of the tablet. As noted below, such very high doses of oral B12 may be effective as treatments, even if gastro-intestinal tract absorption is impaired by gastric atrophy (pernicious anemia).

Injection and patches are sometimes used if digestive absorption is impaired, but there is evidence that this course of action may not be necessary with modern high potency oral supplements (such as 0.5 to 1 mg or more). Even pernicious anemia can be treated entirely by the oral route.[63][64][65] These supplements carry such large doses of the vitamin that 1% to 5% of high oral doses of free crystalline B12 is absorbed along the entire intestine by passive diffusion.

 

[David]

Sorry for the gutrot trouble folks. As always, feel free to report problem posts by clicking on the

found at the bottom left of each post. Thank you

 

[Jessi]

Thanks David. :hug: