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SCD, Strictures, and MSM

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Crohn's Disease
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Posted 10/12/2009 4:11 AM (GMT 0)
Hello,

I started the SCD several months ago after a week long stay in the hospital due to a blockage.  The blockage was a 10cm stricture in the middle of my small intestine caused by a lot of scar tissue and some inflammation -- but mostly by scar tissue.  My doctor says the x-rays showed the stricture was very narrow and would likely require surgery.

As a result of the scar buildup, I have become far less responsive to steroids: For example, in the hospital, I still had crippling pain after several days on the steroid Entocort (Budesonide.)  I felt a little better after taking steroids and starting the SCD (which I did while still in the hospital) and was eventually discharged, but continued having pressure buildup and pain caused by the strictures. 

After several more days went by I started taking 4 grams of pure MSM per day in hopes that this might help with the scar tissue.  So far something I am doing seems to be working, but I feel like I am hanging on by a thread; like the slightest inflammation will send me back to the hospital for surgery.

Has anyone else dealt with this conundrum?  Of course, I would like to avoid surgery all-together, and I feel great on the SCD, but I am not sure how to go about weighing the whole set of tradeoffs of: having strictures versus getting them cut out and moving on.  In either event I plan to stay on the SCD for at least 5-10 more years.  I also plan on ditching the Entocort once I have things under control because I don't know about the long term safety.

Best,
CH

Crohn's Disease - 12 years

SCD - 2 months

Entocort 9mg / day - 2 months

MSM 4 grams / day - 1 month

Surgery - None

 

Posted 10/12/2009 4:28 AM (GMT 0)
please tell me how did you came to decide on the MSM? source etc.

I had a 1st surgery when I had a severe abscess at sigmoid colon, so this was a complication different from stricture to go the surgery route although I did have strictures insmall intestines that were also cut out during the same 1st surgery. The reconnection site was the reoccurring problem area which was the large intestine to the rectum, I did not have problems with the small intestine areas where diseased areas were also removed. Not that I necessarily recommend surgery, just telling you my experience, where it reoccurred. It is certainly possible that strictures in the small intestine leads to problems later in the large intestine if not addressed but thats just a guess.
Posted 10/12/2009 5:05 AM (GMT 0)
I was recently in your shoes. Ultimately, I decided to have the stricture cut out BEFORE it became an emergency situation. This was 3 weeks ago this Tuesday. My surgeon said he didn't know how I wasn't continually having obstructions (I averaged 1 or 2 a year). They took out just a small area, the ileocecal valve/appendix/cecum.

While surgery wasn't a picnic, it also wasn't horrid. It was laproscopic, so I'm recovering quickly. I only spent 2 1/2 days in the hospital.

Like you, I'm sticking to SCD for at least 5 years, and probably for life!

Good luck with whichever route you choose :-).
Posted 10/12/2009 9:16 PM (GMT 0)
I don't know of any way to remove intestinal scar tissue short of surgery. It may be possible to have it widened by a procedure similar to angioplasty, but that depends on where it is and how accessible it is. In the event of surgery or expansion, be sure to take some L-glutamine to promote healing. N-acetyl glucosamine has also been used to help intestinal inflammation, but not - so far as I know - to help strictures due to scarring.
Posted 10/12/2009 10:00 PM (GMT 0)
i have two strictures in my small int.

although surgery seems certain at some point, for now my doctors are telling me not to have it yet due to the fact I feel good and surgery doesnt solve anything in the long run (recurrence rate for resections are very high: 25-35% after 5 years, 40-70% after 15)

here's a good scientific article about surgery and Crohn's :)

https://www.cybersurgery.org/cybersurgery23/CyberPlanner/..%5CQA/Crohns_SOC.pdf

Posted 10/12/2009 10:12 PM (GMT 0)
Keeper, I've read that L-Glutamine might not be good for crohn's (http://www.drhoffman.com/page.cfm/169):

"L-glutamine an amino acid that is the main source of energy for the mucosal cells that line the intestines, and helps them heal. Dosage is adjusted for each patient. The common dose range is 6 to 25 grams divided into 3 doses per day, 30 minutes before meals. Dr. Alan Gaby reported in the Townsend Letters for Doctors and Patients (October 2001, p 19, based on J Parenter Enteral Nutr 2000;24:196.) that glutamine may increase T-cell attack in Crohn's disease. In the Crohn's patient glutamine may also be metabolized into citrulline, which is converted to arginine, a substrate for nitric oxide sythesis. Excessive nitric oxide has been shown to contribute to tissue injury and inflammation in Crohn's disease. L-glutamine seems to be effective in ulcerative colitis."
Posted 10/13/2009 2:36 AM (GMT 0)
How do they know it is scar tissue? I thought the only way they could tell was through a colonoscopy. THe docs who looked at my daughter's X-rays were top GIs, but they all assumed her stricture, because it was so long and so narrow, must include scar tissue. Turns out they were wrong. 

Posted 10/21/2009 8:40 PM (GMT 0)
Medchrt -- There is a lot of information on the internet about MSM and also a book on Amazon (The Miracle of MSM) written by, I believe, a reputable MD.  I have read several reports claiming that MSM somehow softens and dissolves scar tissue, but I have not yet confirmed this through my own research.

Spookyhurst -- I didn't know they could do it as a laparoscopy.

Keeper -- See above.  It may be possible that MSM can help with scarring (once you have induced remission with meds, SCD, etc.)

Njmom -- The doctors did a lot of feeling around and said that they felt rigidness, presumably from scar tissue.  It is possible they are wrong.

Posted 10/21/2009 10:20 PM (GMT 0)
Yep, just 3 incisions. The biggest one is only 1.5 inches long, and runs just to the right of my belly button. The other two are on the left side and are less than a 1/2 inch each. There was also a small puncture on my right side, but it was so tiny it healed within days (although there was a lot of bruising that lasted longer). My surgeon was great! He is pretty young, but said he had already done over 800 of these procedures.
Posted 10/22/2009 5:46 AM (GMT 0)
Spooky - thanks for a good source link. I don't quite know what to make of the report's observation - it is possible that the healing process begins with removal of some tissue. That is the way that bones are regenerated - it starts with breakdown of old bone tissue, so maybe something similar is happening here? The article mentions T cells, but there are many different T cells, so it is a bit hard to know from that just what is happening. I have read that several systems of cells and cytokines work in poorly understood ways, with some cells working in exactly opposite ways under slightly different stimulus.

Carnival Huckster - I will have to wait and see what your results are with the MSM. The rigidness could easily be from inflammation, so let's hope for that.
Posted 10/22/2009 6:04 PM (GMT 0)
Hi Keeper -- I go for an x-ray about once per year. The last x-ray (before I started the SCD and MSM) my doctor said the strictured area was only 5mm wide and I was having lots of gurgling and discomfort. When I flared the pain was excruciating. I will keep track of the results and let you guys know what happens.
Posted 10/22/2009 8:39 PM (GMT 0)
Wow, you do have a stricture! Mine was 7 or 8 mm.
Posted 10/22/2009 8:59 PM (GMT 0)
mine IS 2mm
Posted 10/22/2009 9:20 PM (GMT 0)
Sulfur will tend to crosslink in the protein,, it is more typical for protein in hair, than bowel wall (There are 2 amino acids that have sulfur, cysteine and methionine to which you get aquequate from eggs or other protein.. I do not know how msm (which contains sulfur) would remove scarring. Rather sulfur is part of the amino acids mentioned and would have some effect on making the protein stronger (like vulcanized rubber car rubber, versus an elastic band). Although bowel is not rubber the analogy would be similar I suppose, sulfur would tend to decrease the elasticity. So it makes sense more cysteine is found in hair. So I would say you could get the sulfur from eggs, egg protein, just as well from the msm. The question of scarring removal depends on the protein processing (digestion), i.e. proper digestion, and then the rebuild by the body, i.e. proper reconstruction. If there is scarring a guess would go towards, improper reconstruction I suppose. So msm would help with rebuilding not removal. You want something like vitamin A for removal.
Posted 10/22/2009 10:40 PM (GMT 0)
this is interesting see bottom of page regarding Isotretinoin , (while similar to vitamin A) this says...Several scientific studies have posited that isotretinoin is a possible cause of Crohn's Disease and Ulcerative colitis in some individuals. Three cases in the United States have gone to trial thus far, with all three resulting in multi-million dollar judgments against the makers of isotretinoin; there are an additional 425 cases pending.

The concurrent use of isotretinoin with tetracycline antibiotics or vitamin A supplementation is not recommended. Concurrent use of isotretinoin with tetracyclines significantly increases the risk of idiopathic intracranial hypertension. Concurrent intake of Vitamin A supplementation increases the risk of vitamin A toxicity.[12]

Concurrent use of isotretinoin with methotrexate increases the risk of hepatotoxicity and may increase methotrexate levels. The combination is used with caution and close monitoring of adverse effects and liver function tests.

So careful if you take these, and decide to take vitamin A.
Posted 10/23/2009 1:54 AM (GMT 0)
medchrt1- That is great information about MSM, although I've read from many different sources that MSM somehow softens scar tissue. I have a great source for vitamin A for anyone who is interested: get a juicer and go to Costco for a bunch of organic carrots. Be careful about overdosing on vitamin A!

Here is a case study on MSM from Oregon Health Science University, Department of Surgery in Portland**:

"Burn victim, Bill Rich, discovered MSM for himself when a veterinarian friend had him try MSM.

Bill explains that his skin was flat, purple and leathery, up and down a majority of the right side of his body. After only a few days of taking MSM, Bill noticed an increase of stamina and energy, and over time an astonishing effect on his scarred skin as it started to turn pink and fill in.

Now Bill has little more than a small section of skin that is still barely detectable after having more than 60 feet of skin graft scars. After years of using MSM and helping others, Bill Rich lectures on the benefits of MSM. If you get a cassette tape about MSM it may well be Bill Rich talking."

** I found this syndicated on another site, but could not find the original article on the Oregon Health Science University web site.
Posted 10/23/2009 2:29 AM (GMT 0)
hmmmm..not quite ...if your bowel is like a wall and the paint on the the (bowel) wall is egg protein then the sulfur additions are the paint (protein) hardeners, while the vitamin A or retinoids are the paint removers. I think that can be verified by a dermatologist or moderator. So we have both ends of the spectrum here. I dont see the MSM on the softening end.

I think the use of the word trigger regarding the isotretinoin is extrememly interesting in that, at some point this vitamin A type "softener", becomes detrimental. I would like to understand more... at what point the retinoid is thought to "cause" crohns or IBD. I cannot help but think this is not just a result of having an excess of the retinoid. It suggests the retinoid will cause the paint to soften, crack, chip or eventually ulcerate, (in this analogy) but the use of the word trigger in reference 39, suggests there is something more to this and wouldnt mind reading the complete reference.
http://en.wikipedia.org/wiki/Isotretinoin
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