New to this...

[bbelknap]

Hello,
Thanks to all for this forum and the warm and well designed welcome. Diagnosed with Crohn's recently (about 5 weeks ago), in hindsight I've probably been dealing with it for several years now. After spending some time in hospital, I was sent home with prednisone and am being urged to begin treatments with inflectra. At this point I'm delaying those treatments in hopes of finding some more "organic" methods of controlling this ailment. I'm grateful to those who've shared their experiences and eager to start learning from them.
Barb

 

[awoenker12]

Unfortunately, there is no "organic" method in treating Crohn's disease. You need medications in order to treat any ongoing inflammation, and you have to stay on those meds even if you are in remission, otherwise you will flare. My disease was under control, and I thought I didn't need medication, so I stopped, and I flared. Now I am on remicade and thankfully it is under control again. Dieting along with medication may help with some people, but it will not treat this disease.

 

[NuttyGuts]

Well said, Awoenker12, and how are you doing, by the way?.

I was like you for many years, Barb, and thought I was doing a fine job with just supplements and watching my diet. What I didn't understand was that just because I was feeling well did not mean that inflammation was not going on. So now, after having Crohn's for years, I have developed strictures in my small intestine that can be very painful. Food backs up at the stricture and I can actually feel hard masses forming and then dissipating in my abdomen. I was on prednisone for several months, and am now on Remicade and azathioprine. I feel better but both the GI doc and colo-rectal surgeon agree that because of the strictures, surgery is probably the smartest move for me. I am still trying to get my mind wrapped around that. I was always the healthy one that never even took aspirin- it has been a hard mindset adjustment for me to realize that drugs and surgery are now a part of my life.

There are many interesting stories on this forum, and some wonderful folks that don't mind sharing their experience. I am sure you will find some helpful info here. Welcome!

 

[bbelknap]

Thanks for the notes - however discouraging.

Coming from the land of (once upon a time) socialized medicine I'll admit that I've got some serious misgivings about the association between the pharmaceuticals and their administration. Up here the "infusion clinics" are each linked with their own brand of biologic. The only drug administered by the clinic to which I've been referred then is Remicade. Happy coincidence that the clinic is in the same building as my specialist?
Paranoid maybe. For the time being I've signed on with a naturopath who specializes in auto-immune disorders. She seems knowledgeable and is comfortable working with conventional treatments if necessary.

I guess I'm going avoid the big pharma-wheel as long as I can while I gain some understanding of it and it's alternatives.
Thanks

 

[Tuff]

My infusion clinic is not where my gastroenterologist is located. Each company that owns the rights to a biologic have their own clinic. The nurses are specially trained to infuse, and know what to look out for. My clinic does Remicade and Stelara, so the same company must own them both. I too hesitated, for too long, to go on a biologic. After spending 5 1/2 months in a hospital, I was happy to go on Remicade. I hope you will at least get tested periodically, because the disease can do a lot of damage to your intestines silently, and then it is a lot harder to get things under control. Take care.

 

[Scipio]

My clinic does Remicade and Stelara, so the same company must own them both. .

Correct. Remicade and Stelara are both from Janssen.

Also, like many others, I tried to get away with minimal and mild medication in the first few years after I was diagnosed. And I felt pretty good for the most part and thought I was doing very well. But that all changed after about 5 or 6 years after diagnosis when Crohn's upped its game and attacked my pericardium (the membrane surrounding the heart) in a fierce extra-intestinal manifestation. I soon found myself on the operating table with my chest open getting a pericardiectomy.

Now I'm wiser. Now I'm on Stelara.

 

[awoenker12]

NuttyGuts, I am doing very well. I have been doing a lot of running lately, and I will probably do some lifting too. I play baseball in the summer, and I want to be good and ready for next year. How have you been doing lately?

 

[NuttyGuts]

Hey, that's great, Awoenker12! Glad to hear you are so physically active! I felt too weak to help my husband with the bee hives this summer, but luckily he had a friend who was willing to lend a hand. Now that the honey is extracted, I can handle pouring it into jars and labeling. I will be going for my third Remicade infusion first week of Nov, and the GI doc let me back off to 50mg azathioprine due to an infection. Both the GI doc and surgeon think I still should choose surgery due to the stricture, so I have an appointment with the surgeon next week. I haven't had surgery for anything since tonsilitis at age seven, so I am a little nervous! Hoping the Remicade continues to work for us to keep the inflammation down.

 

[awoenker12]

NuttyGuts, Yeah, I love to run and keep active, then again, I'm young (I'm a junior in high school by the way). I run for my school's cross country team, and in fact, our season just ended yesterday. I'm not a super fast runner, my best 5k time is 22:34, but hope to get better. Thank God for remicade, because without it, I would never feel like running. I hope the best for you!

 

[bbelknap]

I've been diagnosed with moderate to severe Crohn's. Flaring involves:abdominal pain; diarrhea (16-20 bowel movements/day); rectal bleeding; arthritis; mouth sores; anal abscesses and thrombotic hemorrhoids. Prednisone involves: bone-loss; unusual bruising; thinning hair; night sweats; increased appetite (and not for the good stuff); messed-up sense of taste; and insomnia.
I'm being encouraged by my gastro-interologist to begin treatments of "inflectra" (remicade biosimilar) but I'm dragging my feet. The further I research, the more misgivings I have about "biologics". They're incredibly expensive, with no guarantees on length of their effectiveness nor on the security of their supply. And then there are the side effects (!)
Please, can someone give me a convincing argument for this treatment based on long-term research rather than short-term anecdote?

So sorry for your trials Scipio. (I've just turned 59 and certainly didn't see this coming.)
Thanks also to Nutty Guts. Sounds like we have much in common. (I'm an organic farmer and we also have bees.)

Best to all, Barb

 

[NuttyGuts]

Hi Barb,
I know how you feel, and I too objected to all the "normal " ways of treating this disease. I wanted to do the organic route of diet and low dose naltrexone but it was not to be. My Crohn's is severe and I have strictures which give me pain. I have been able to get off the prednisone at last, but am going for my third Remicade infusion next week. I take Imuran (azathiorpine) every day to keep from building anitbodies to the Remicade. My hair is starting to fall out really bad, and I have developed a couple vaginal infections. But this is all still better than the pain I endured as my strictures got worse and worse. I am scheduled for surgery in January, and will go back on Remicade and Imuran after that. But my goal is to get on the SCD diet and low dose naltrexone after surgery, maybe by Feb. It will be a very hard diet for me to follow, as I love carbs like bread and crackers. But there are many sites that can help with getting on the diet and providing recipes. Hope I can do it and one day get off the Remicade, but for now, I am doing what my GI doc thinks is best.
Wishing you the best- I hope you find what works the best for you!

 

[Scipio]

Please, can someone give me a convincing argument for this treatment based on long-term research rather than short-term anecdote?

Here you go: https://www.ncbi.nlm.nih.gov/pubmed/29462395

"Conclusions:
Through more than 13 years of registry experience and an overall median duration of patient follow-up >6 years, mortality was similar between the infliximab-treated and other-treatments-only groups. These final cumulative results are representative of real-world experience among infliximab-treated patients with CD and are consistent with the known risks of disease activity and tumor necrosis factor antagonist therapy."

 

[bbelknap]

Hmm...

I suppose that's some comfort w. regards to mortality but morbidity (especially in we older patients) and infection seems to increase with this treatment.
Thank you, Barb

 

[Scipio]

The serious side effects of Remicade are real and scary-sounding, but fortunately they are rare. The biggest threat to the health of a Crohn's patient is not side effects from scientifically-proven medications. By far the biggest threat to the health of a Crohn's patient is the devastating effects of uncontrolled or poorly-controlled Crohn's disease. That's what Crohn's patients should really be scared of - far more than the drugs.

Your doc wants to move you to stronger medicine because "abdominal pain; diarrhea (16-20 bowel movements/day); rectal bleeding; arthritis; mouth sores; anal abscesses and thrombotic hemorrhoids" are the marks of uncontrolled disease.

If the only risk of uncontrolled disease were just putting up with the misery caused by Crohn's inflammation for while, that might be a risk worth taking. But unfortunately the damage is cumulative. The more often you flare and the longer the inflammation drags on the greater the permanent damage to your gut - often resulting in strictures, bowel blockage, fistulas, and perforations. Once your gut tissue is destroyed by disease and/or removed by surgery it's gone for good. Better to apply the strong medicine now so that you still have most of your gut functioning later.

 

[bbelknap]

Interesting. Can I take from this that if I am symptom-free then there should be no damage taking place? I've yet to have another flare though the last one went on for three months. While I wouldn't say that I am now symptom-free, I'm certainly much better than I was. What I'm hearing is that it is wrong to think that I can regain my health without the use of biologics. From reading this blog alone it's evident that all prescribed treatments are complicated by side effects and none have guaranteed efficacy many with as low as 60% of subjects responding and over half of the rest experiencing relapses within one yr. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5672704/) I have not yet read of anyone who has been able to remain in remission for more than 3yrs without adjustments to meds and the concurrent flares. Further, it seems none of these medications offer any promise of avoiding surgery.

What do we do as the "strong medicines" stop working? I'm trying to find my health. I don't think fear is going to help.
Thanks for your thoughts. I'm off to eat some sauerkraut (lol)

B

 

[emmaaaargh]

Interesting. Can I take from this that if I am symptom-free then there should be no damage taking place?

Unfortunately not! I wish that were the case, but it is very possible (and not all that uncommon) to be completely asymptomatic while the disease is raging inside.

I have personal experience with this: I had active disease all throughout my teens (and still do, so I guess I've been flaring for at least six years now, technically), but no symptoms. I stuck my head in the sand and elected to ignore what the numbers on the paper were telling me because I was feeling good and I was afraid of biologics. That lasted a few years, until the storm broke: now, I'm doing worse than I ever have symptom-wise, and I'm having to endure it for even longer because my first biologic was not effective but I have to wait for the procedures to be followed before I can try another one. I really regret my previous shortsightedness! I often wonder if, had I not waited so long, I might have found better success with my treatment, because the damage that needed healing would not have been so severe.

 

[Scipio]

I have not yet read of anyone who has been able to remain in remission for more than 3yrs without adjustments to meds and the concurrent flares. Further, it seems none of these medications offer any promise of avoiding surgery.

What do we do as the "strong medicines" stop working? I'm trying to find my health. I don't think fear is going to help.

The anti-TNFs have been shown to reduce the risk of IBD-related surgery:

Infliximab reduces the risk of needing IBD surgery:
https://www.valueinhealthjournal.com/article/S1098-3015(12)02464-3/fulltext
Results
Nine trials and 9 observational studies were included. Infliximab significantly decreased risk of gastrointestinal surgery in experimental studies (OR 0.36; 95%CI: 0.18-0.71), both in DC (OR 0.25; 95%CI: 0.10-0.63) and UC (OR 0:55; 95%CI: 0.40-0.76). In absolute terms, there was a 9% reduction in the rate of surgery (95%CI: 1-19%). Observational studies also showed a reduced risk of surgery, which was significant in the case of CD (OR 0.42; 95% CI: 0.22 to 0.78). Infliximab significantly reduced the risk of hospitalization, both in experimental (OR 0.48; 95%CI: 0.34-0.66) and observational (OR 0:38; 95%CI: 0.24-0.58) studies, with a decrease of 9% in hospitalization rate (95%CI: 5-14%). Mean duration of hospitalization was shorten by 4.2 days (95%CI: 1.9-6.5) in infliximab treated patients.
Conclusions
Based on the best available evidence, infliximab therapy is associated with a reduced risk of gastrointestinal surgery and hospitalization rates in patients with IBD.

https://www.researchgate.net/public...Disease_A_Systematic_Review_and_Meta-analysis
“The best evidence available points toward a reduction of the risk of hospitalization and major surgery requirement in patients with IBD treated with infliximab. This impact is clinically and economically relevant because hospitalization and surgery are considered to be markers of disease severity and significantly contribute to the total direct costs associated with IBD. “


You appear to be looking for a treatment that will pretty much completely alleviate moderate to severe Crohn's disease for years and years, without any change or adjustment of medication or dose, that works well for everybody, and with no risk of serious side effects. Yeah, I'm looking for that treatment too. We all are. Unfortunately, such a miracle cure does not yet exist. I wish it did. In the meantime we have to do the best we can with the tools we've got.

I agree that fear is not going to help Crohn's patients find their health. This is especially true of the excessive fear of rare side-effects that keeps us from considering many of the best and most successful treatment options available today. That fear will definitely be an obstacle in the way of regaining our health.