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Unusual path to success

Hi All. I'm a 52yo male who developed illeal Crohn's 30 years ago. I also have oral Crohns and psoriatic arthritis. My conditions were all moderate to severe before medication, and reasonably refractory to mild treatments like mesalamine. The one blessing is that my Crohns has never been fistulizing.

I'm in very good shape these days - largely free of symptoms - and I'm a strong and athletic 220 lbs. I've never required a resection.

So, here is what I think I've learned over the years.

(1). Be aggressive with the medications and, if possible, get the symptoms under control and keep them there.

With the meds, less is not more. On top of the diurnal misery, the negative effects of uncontrolled inflammation are very serious. Yes, the biologics like Humira may pose some long-term risk of lymphoma. But active ileitis and coltis pose even greater cancer risk. The metabolic consequences of inflammation are pretty deadly - insulin resistance, atherosclerosis, and on and on.

I'm on Humira + MTX now. Over the years I've used Enbrel, cyclosporine, 6mp, mycophenylate mofetil, Cimzia, etc. I have found that the mix of a mAB (like Humira) with an anti-metabolite (like 6mp) plus short cycles of Cipro works best. I have not tried Stelara.

(2). It is important to stay ahead of the curve and treat opportunistic infections aggressively when you are on immunosuppressive drugs. My doctor lets me keep a supply of Cipro or Zpaks handy for quick treatment of infections that look bacterial. I tend to get bacterial URI's. Get your flu vaccines every year too.

(3). Hormones matter. My doctor had me try testosterone replacement therapy because my test was borderline low. The improvement in mood and libido was expected. What I didn't expect was a big improvement in my Crohns symptoms, especially reduced oral ulceration, and in my arthritis. Seeing the results my doctor pressed the dosages higher to see how I responded. He also had me try nandrolone, which is a tweaked testosterone with some anti-inflammatory properties. Nandrolone is the bomb, and 200mg/week basically put me in near remission (oral and arthritic symptoms are perfect, illeal symptoms are 80-90%). So I have Rx's for testosterone 200mg / week, nandrolone 200mg / week, and some anti-oestrogens to keep oestradiol under control. These are big dosages but my results and blood tests are great. I've been able to reduce my dosing of Humira and MTX (in half) with no problems.

I did a little research and found that there have been some intriguing research findings about the interactions between MTX and androgens. The combo apparently potently inhibits macrophage activation in vitro.

If you are a guy who is interested in this stuff, the a good way to proceed is to get a GP who treats a lot of HIV patients. My GP in downtown NY happened to treat a fair number of these patients and so knew what to do with the wasting, midsection fat, etc. in Crohns. The next best choice is to go to a men's health / andrology clinic like NYU's.

(4). People with Crohns tend to develop excess amounts of metabolically active visceral fat. The fat produces inflammatory cytokines like TNF-a, as well as aromatase which increases oestrogen, leading to fat deposition, water retention, and other problems. Visceral fat is also associated with insulin resistance (pre-diabetes). One sign of insulin resistance is getting v sleepy after eating carbs.

There are several ways to address this.
- exercise
- controlling the disease thru medication
- taking testosterone, suppressing oestrogen

Oxandrolone has been used to reduce trunkal fat, but this drug is pretty liver toxic and is therefore off-limits for someone on MTX. HGH has been used for this fat, but is expensive and tend to worsen insulin resistance.

The answer may be Metformin, a common drug for type 2 diabetes. It reduces visceral fat and insulin resistance. It is very safe with minor negative side effects. I take metformin 500mg twice a day.

(5). Go live your life even if you are not feeling perfect. You are not alone - lots of people feel crappy for one reason or another, and being engaged takes your mind off the discomforts.

I hope my experience and observations will be useful to others. To recap
- do not undermedicate! Combo therapy works well.
- if you are a guy, you may benefit from getting your testosterone levels up to the top of the normal range or even higher
- nandrolone works great at reducing inflammation and preserving lean body mass, esp. together with MTX
- keep your oestradiol E3 down to about 20
- get lean, strong and fit via exercise, good food, hormone balance, and maybe metformin (if you have IR or excess trunkal fat).

Take care!
 

nogutsnoglory

Moderator
I never heard of testosterone being used as a crohns treatment or visceral fat being more prominent in those with IBD. It doesn't seem to make sense being that most of us are very underweight due to malnutrition and absorption issues.

Can you link us to some research to back up your claims? I'm glad you feel better but this is totally news to me.
 
Sure. The relationship between visceral fat (also called mesenteric fat) and Crohns is very well known. Indeed, it is a "hallmark" of the disease. Just go to PubMed and type in "Crohns visceral fat". If you are not using PubMed yet, it's a great tool.

They won't let me post links to other sites yet because I have fewer than 10 postings. But look at PubMed Id = 20625283

I'll get to testosterone in a minute.
 
Obesity, visceral fat and Crohn's disease.
Bertin B, Desreumaux P, Dubuquoy L.
Source
Université Lille Nord de France, France.
Abstract
PURPOSE OF REVIEW:
Increasing evidence indicates that adipose tissue is an active endocrine organ involved in metabolic syndrome and regulation of inflammation. Visceral fat accumulation is a hallmark of both obesity and Crohn's disease. Here, we present recent data describing the immune properties of intra-abdominal adipose tissue that could link the innate immune response to obesity-related disorders and gut inflammation.
RECENT FINDINGS:
Innate immune properties of adipocytes have become well characterized since recent studies described the Toll-like receptor (TLR) expression repertoire and specific TLR ligand responses of adipocytes. Adipokine secretion profiles have also been elucidated both in obese patients, when they may be involved in obesity-associated metabolic disease, and in Crohn's disease. Whereas mesenteric fat hypertrophy and fat wrapping of the bowel are characteristic of Crohn's disease, there exists a paucity of information concerning this important pathophysiological aspect. Our current classical animal models are of limited interest when investigating the role of mesenteric fat in gut inflammation. Recent new alternative disease paradigms could help to design more specific models for elucidating chronic transmural inflammation of the gut.
 
Sorry for the lengthy cut/paste but the site won't permit me to link yet.😁

So, on the subject of sex hormones and the immune system, there is a vast literature. Scientists have been intrigued by the higher prevalence of many autoimmune diseases among women, and the correlation of disease flares with hormonal fluctuation (e.g. SLE activity in pregnancy). Androgen therapy has actually been tried in post-menopausal women with lupus. There is every reason to think sex hormones are very relevant to the immune system and inflammatory processes.

Now, there is very little specific evidence about the use of testosterone and other androgens in Crohn's. That's why my personal experience is potentially relevant to someone. One small study is Farid Saad's:
"Administration of testosterone to elderly hypogonadal men with Crohn’s disease improves their Crohn’s disease activity index: a pilot study"
 

nogutsnoglory

Moderator
Interesting thank you. I will need to sit down and read these as well as Pubmed. I wonder why GI docs aren't prescribing testosterone if there is a benefit to it. Is that standard crohns treatment at NYU or just that doc?
 
I began estrogen replacement last year due to menopause. I also ended up in the hospital in a flare with a blockage right after we discovered that I was no longer producing the estrogen (tested at my request). Because of the crohn's I was put on replacement therapy using a transdermal system. My GP upon speaking with my GI found that oral replacement was not a good option for me. That particular flare in my mind, was brought on due to my lessening ability to produce estrogen. Symptoms kept coming on until I seemed to go in a spiral that year. I can see how the same would be true for males as well.

My husband is on replacement therapy. He rubs it on the shoulders to be absorbed. He does not have crohn's but 2 other chronic illnesses. I don't know that this has anything to do with them though. His symptoms that prodded level checks were: depression, loss of muscle strength, fatigue and libido. It has made a world of difference in the quality of life for him.
 
I think it relates to the extreme conservatism of medical practice. This conservatism doesn't just show up in the attitude toward proposed new treatments, but even in very mainstream choices. Methotrexate is an old drug used very extensively in rheumatology and dermatology. But gastros have been fairly slow to deploy it in Crohn's even though the data seem to indicate that injected MTX works slightly better than the thiopurines (6mp, azathioprine). I asked my gastro why? He said "habit, familarity". And then when MTX is prescribed, more often than not the RX is for oral methotrexate. Subcutaneous is known to work better. Hmm. There are many more examples.

So, we have IMHO to accept the limitations of the world and look a bit after ourselves. If you are in the New York area, you might want to visit Dr. Alukal's men's health clinic. I'm not his patient as I now live in the UK, but he's great. Most big teaching hospitals have departments like this, and many guys would be well served by getting this kind of care.
 
I began estrogen replacement last year due to menopause. I also ended up in the hospital in a flare with a blockage right after we discovered that I was no longer producing the estrogen (tested at my request). Because of the crohn's I was put on replacement therapy using a transdermal system. My GP upon speaking with my GI found that oral replacement was not a good option for me. That particular flare in my mind, was brought on due to my lessening ability to produce estrogen. Symptoms kept coming on until I seemed to go in a spiral that year. I can see how the same would be true for males as well.

My husband is on replacement therapy. He rubs it on the shoulders to be absorbed. He does not have crohn's but 2 other chronic illnesses. I don't know that this has anything to do with them though. His symptoms that prodded level checks were: depression, loss of muscle strength, fatigue and libido. It has made a world of difference in the quality of life for him.
Glad to hear about your husband. As for your experience, I wish I had something useful to say about women's hormones. According to a prior doctor of mine, men are really simple but women's hrt is complex. The doctor said: " You get a guy up to the top of the normal range for T (about 1000) and free T, get the E3 down to 25 or less, run PSAs and are you all set. Very different for women".
Another factor is the estrogens tend to immuno-stimulatory and pro-proliferative. Best of luck!
 

UnXmas

Banned
Thank you for sharing your findings. Medications tend to be talked about with a lot of negativity because the side effects can be so bad and because many people object to ingesting things deemed unnatural. But medications (and surgeries) have achieved positive results for me and my life would be a whole lot worse without them - in fact I wouldn't be alive at all. I haven't heard much about a relationship between hormones and Crohn's other than speculation about why Crohn's often comes on in adolescence and a possible hormonal connection. But I've found getting on the right hormone medication has helped many of my non-Crohn's problems enormously (I'm female and taking anti-androgens and oestrogen has really helped to normalise my hormone levels).
 
I probably should also mention what hasn't worked for me, etc.
+ mesalamine and azulfidine didn't help
+ curcumin / turmeric didn't help
+ fish oil (up to 3g dha+epa) was a bust, but I still take for other reasons
+ boswellia made my arthritis worse
+ DHEA made my oral Crohn's worse
+ cannibis - no discernable effect on my Crohn's
+ antibiotics generally helped
+ NAC didn't help and may reduce the efficacy of MTX
+ carnitine has been helpful with fatigue
+ provigil and Proviron both helped me with energy levels
+ Crestor has been good for LDL lowering although testosterone did more on that front. My LDL is now 60-70 on only 5mg of Crestor a day. Crestor despite having anti-inflammatory properties did nothing for the CD.
+ alcohol makes my CD worse and should be limited if on MTX

Well, that's pretty much the sum of my personal "knowledge". I'm in Spain on vacation, and feeling really good. 👍
 
Brutale— as far as cannabis, did you smoke, eat edibles? For me smoking does nothing positive for Crohn’s, but ingesting very high doses of oil does. I think most people would have a hard time with the dose i take but I had to work up to it. 1000-1500mg of thc and an equal amount of cbd definitely help my Crohn’s.
 
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