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I'm worried i wont go into remmission

Thanks for reading,

My name is Damian and i am a 40 year old father of two girls and i have been diagnosed with Crohns over 2 years ago. I am a financial advisor on Wall st and have a dual residence in NYC and Chicago. My wife is from Chicago and I am a financial advisor by week and a suburban father of two on the weekeneds {i travel every weekend back and forth}. I was a broker on wall st on Sept 11 2001when the twin towers came tumbling down. From what ive been hearing the aftermath of 9 11 has caused a series of auto immune issues for those that were exposed. I had an emergency apendectomy in may and have been dealing with a massive flare ever since. I am now off pred and trying to self medicate with natural therapies such as tart cherry concentrate, aloe vera stomach formaula, green vibrance, mastic gum, vitamin b and d, colostrum and a pharmcuetical by the name of Pentasa. I am also taking a heavy dose of omega 3. I still have urgency, some blood in my stool, diarrhea but then i also have some relatively normal movements. i am worried that these therapies wont set remission in motion. my doc want me to go on remicade however since i heard about these therapies i wnted to give it i try compared to more drugs that werent really having the desired affect. if there are any success stories or recomendations please hook me up! thanks for your time and any correspondence! Damian Defex:strawberry::strawberry:
 
When our son was diagnosed the last thing I wanted was for him to be on a bunch of drugs. But, I trusted his GI and educated myself and became more comfortable with the medications. Two years later I am so grateful these medications are available. My husband and I didn't realized how poorly our son felt until he was well again. You have to weigh if medications are more or less harmful than leaving Crohn's disease under-treated in your body. These GI's treat people all day, every day and many of them were practicing when people didn't have options like remicade. They know what they are talking about.

Pentasa is a 5ASA class drug that is not authorized for treatment for Crohn's. It is used to treat Ulcerative colitis and used in combination with other drugs to treat crohns. It treats surface level inflammation, but crohn's disease goes deep into the tissue. Our GI said it was like taking aspirin for a brain tumor. Honestly, I think it can give you a false sense of security because it soothes the top layer but meanwhile damage is slowly being done deep below.

Also, the longer you go with out meds the less likely it is they will work for you when you try them. These drugs are far more effective the less damage you have.

The good news is a lot of people are on meds, with no side effects and it has literally given them their life back. We thought we would give 6mp a try, knowing we could take our son off of it later if we felt is wasn't worth it. Remicade is different though, once you are on it, if you stop your body will make antibodies and it won't work for you again.

Never easy decisions. (((((Hugs))))))
 
Thank you very much for your time and thoughts. Your right it's a lot to think about and a lot to absorb. I am going to see if this regime gives me any signs of hope. If not I'm going back on the meds. I wish u and your family all the best! I will be active on the forum at least over the near term and will let you know where I'm at!
 

Tesscorm

Moderator
Staff member
Hi Damian,

My son was diagnosed with crohns a bit over two years ago. Decisions regarding medications and treatments are always tough and all come with risks. The 'safer' medical or non-medical treatments would be

- some control with diets and/or supplements. There is a subforum here which will offer you lots of info re diets such as paleo, scd, etc. I haven't tried these with my son - being a picky 16 year old, I knew it would be a no-go from the start. GIs will tell you diet doesn't not cause a flare nor will it cure/control crohns. Personally, I think this is probably true, however, I do think diet can play a part in controlling symptoms (ie spicy or high fibre food is likely to irritate an inflamed intestine). But, many people do find relief with diet... FWIW, my son has taken 1000mg Krill Oil and 2000 Vit D almost since diagnosis, not sure if they help but I don't believe they're hurting.
- Enteral nutrition (EN) - exclusive EN has a comparable success rate at inducing remission as do steroids (at least in children) with absolutely no side effects! My son did this to induce remission and it helped him immediately. But, it is a challenge as it involves a diet of only the EN formula, no other food!!, for approx. 6 weeks. It provides all the necessary nutrition, is anti-inflammatory and offers some mucosal healing. While the success rate that I'm familiar with is with children, my son was almost 17, 5'10" and 125 lbs (145lbs before his first flare) when starting this treatment so not quite a 'child'. It's commonly used around the world, except in the U.S. - perhaps because of patient compliancy or insurance reasons??? My son also continued with supplemental EN (1/2 dose but with a regular diet added back) for almost two years and it kept things stable and he did not have another flare. Unfortunately, it did not eliminate all inflammation and remicade was added.
- Low Dose Naltrexone (LDN) - most GIs are reluctant to prescribe LDN as there are only a few studies showing it's efficacy. However, there are a number of members who are using LDN with success. LDN has very little in the way of side effects/risks. It was my preference to try this for my son but... his GI would not prescribe and was adamant remicade was the best choice.
- Pentasa - as Johnnysmom said above, Pentasa is not usually successful with crohns but, some do find it helps.

There are treatment subforums for all the treatments I mentioned above.

There are risks with all the meds and I hated and still hate the thought that my son is on remicade. But, I try to keep it in perspective... the risks are quite low with the meds and we take on risks every day. My son played competitive hockey for years, and I dreaded those games - was afraid to watch and afraid to be away should he be hurt (truly, there were times I could only breathe when he was on the bench or penalty box! :lol:)! Anyone familiar with hockey knows there's a risk of serious injury, yet I took those risks with 'fun' being his only reward. Playing hockey improved his quality of life as, I hope, will remicade.

Undertreated crohns brings about its own risks - chronic inflammation can cause strictures/scarring. This cannot be treated with meds, only surgery. My son was having no symptoms at all when his GI recommended remicade, however, MREs did show ongoing inflammation and his GI (and my son) wanted to avoid the potential for surgery, hence the remicade. I have read research that has indicated remicade has the greatest potential for success if used within a couple of years of diagnosis or as a first treatment - another reason I accepted remicade, if we would eventually be using it anyway, I wanted to give it its best chance at working.

I am not trying to convince you to go with remicade... it truly is a tough call and, without a crystal ball, impossible to know what the right decision is. I've read of many members here who join after being without meds for years and having their first (after diagnosis) flare after 10, 20 years!

I also work in the finance industry and, I guess, to a degree, I've used the same 'logic' - I've taken all the info I can find, make a decision and don't look back. :( Not ideal but we're in a far from ideal situation in which to make decisions.

Hope some of that helps!
 
Thank you so much for sharing your story! The more I hear the more confused I get. I don't want to leave my issue untreated and get worse. I will however see if these remedies work to some degree and make some decisions in the near term. Sometimes I feel like I don't trust my GI but maybe have to have more faith in him. Getting crushed on the boards in some way prob feels like the pain from crohns. The big difference is that he loved every minute of it. Your a great mom and thanks for your comments. All the best to u and your family!
 

Tesscorm

Moderator
Staff member
I don't know much about any other illnesses but I do know that crohns is very confusing and frustrating!!! The success of meds seem to depend on the person and what is successful today may not be successful in a year, often with no reason for the lack or change of success! :ybatty: On top of that, GI recommendations are partly made on their own preference/experience... some prefer the bottom up approach, using the 5-ASAs (pentasa is one), then moving to immunosuppressants and then to biologics, other GIs prefer the top-down approach, hitting the inflammation hard and start with the biologics. Obviously, there are other factors that play a big part - location, severity, complications, etc. but there is definitely an element of their own experiences/preferences.

I can certainly understand you wanting to continue with your current treatment for a while. I don't know where your crohns is located but, depending on its location, try to get imaging tests (such as MREs) done on a regular basis - bloodwork doesn't always give a full/complete picture. (If your crohns is located in the small intestine, scopes are only helpful to a degree ... MREs or capsule endoscopies will provide better imaging of the small intestine.) In the first two years, my son had two colonoscopies/endoscopies and MREs every six months (one of which we traveled to the U.S. for and paid for ourselves because of the wait times in Toronto). Request copies of all test results!! Unbelievably, because I do request copies of all tests, there are have been, at least, two instances when results were never sent to the doctor and it seemed it was only when I asked for the results that they realized they didn't have them?!?!? I really hope that they would eventually have realized that they didn't receive the results but... just not willing to leave that to chance! :lol: However, I've read that many U.S. hospitals/GIs provide patients with their results online???

If you are able to get regular imaging and bloodwork, it will certainly help you and your GI determine if your current treatment is helping and, hopefully, quickly alert you to a problem.

As far as trusting the GI... I've found this tough. I've found its very easy to 'shoot the messenger', the GI is telling you things you don't want to hear and I think it's comforting to 'doubt' his recommendations (if that makes sense??). My son's GI is one of the best, in a very well-respected IBD clinic within a well-respected top hospital yet I seem to question every test and every recommendation and then question why he HASN'T made certain recommendations! :ack: I wholeheartedly believe it's important to be as informed as you can be and advocate for yourself, but I also remind myself that, as much as I've learned about crohns, it's minute compared to the GI's knowledge and experience... unfortunately, he just doesn't have the answer I want. But, if you continue to be uncomfortable or continue to have doubts, look into a second opinion!

If you have any questions, feel free to ask... there are tons of very informed members here and the many subforums have lots of info!

Good luck!! :)
 
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