SRS Anyone else have surgery for colitis?

Discussion in 'On Topic' started by kendog, Jun 23, 2009.

  1. kendog

    kendog Active Member

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    having the J-pouch and whatnot? I'm extremely close to setting up the surgery and moving forward. The chances of post op complications are decently high enough to be worried about but these medications like prednisone are killing me mentally and physically. It's almost like a lose/lose situation no matter what I do.
     
  2. METALLlC BLUE

    METALLlC BLUE New Member

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    There is controversy in the medical community that Colitis of that sort may in-fact be a bacterial infection. You may wish to consider that route before having serious surgery. Also VSL#3 is a probiotic that has proven in a few double blind placebo trials to substantially reduce symptoms of colitis in patients.

    May be worth looking into.
     
  3. Falconer

    Falconer OT Supporter

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    Osiris' Prochymal stem cells are proving to be effective in clinical trials for Crohn's. I'm not sure if they're applicable to UC. Google "Osiris Prochymal stem cells".

    http://www.osiris.com/products_prochymal.php

    What medications have you tried? How long have you had UC? Do you keep a food diary and have you noticed any correlation between certain meals and flareups?

    I haven't heard of VSL#3 but I'm gonna look into it. I emailed some people a while back who were studying probiotics in IBD patients and their research suggested that there was no improvement with any of the probiotic strains and they "did not recommend any for IBD."

    You might also want to look into marijuana research. Marijuana is a powerful anti-inflamatory (CB2 receptors) and I've read of many cases of people with Crohn's who say that weed can stop a flareup in 3 days, and treats their symptoms better than all other prescription medications, not to mention the side effect of increased appetite is beneficial to people with IBD who don't like to eat, anyway. Oh yeah, and unlike other IBD treatments, weed doesn't cost $5k per month, and it doesn't destroy your immune system, either. I remember one site where a guy said everyone in his family had Crohn's, and they all had colostomy bags except for him, because he was the only one who smoked weed. I know that's not a clinical study right there, but that kind of theme seems to repeat. Google "marijuana ulcerative colitis."

    I think I know of an OTer who has a J-pouch. I will PM him a link to this thread.
     
  4. deusexaethera

    deusexaethera OT Supporter

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    Before I did that, I'd bomb the fuck out of myself with every antibiotic known to man, then go on a yogurt and cereal diet for a week to repopulate the microflora.

    Have they tested the pH of your BMs? If your small intestine isn't neutralizing the acid coming from your stomach, that acid could do unpleasant things to your insides.
     
  5. kendog

    kendog Active Member

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    I've been to 3-5 different doctors over the years and they all seem to just accept it as an auto immune disease. I'm not sure these ideas about bacteria and whatnot have much merit, it's a pretty strong disease. I don't notice much from diet, although sugary foods can cause some grumbling, but I don't have a sweet tooth anyways. I'm taking probiotics now, but not the quality of those VSL #3 ones, not sure I want to pay $60-70 a bottle, but hey it would beat surgery I guess.

    I've had more than one doctor mention surgery and I was really close to calling today to get the surgery setup. I told myself I wouldn't take prednisone again but I started taking some a couple days ago, don't want to be on it anymore than about 5 days and if it doesn't calm I will probably go forward with surgery. I bought a pack of smokes since there is evidence nicotine can help calm UC flairs, probably won't help though.
     
  6. kendog

    kendog Active Member

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    Any complications, like pouchitis or anything?
     
    Last edited by a moderator: Jun 28, 2009
  7. kendog

    kendog Active Member

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    I've been on mesalamine enemas, Imuran, Remicade, Humira, Prednisone, Asacol, some other foam type enema. I went into perfect remission when I became depressed and turned my diet extremely bland, like primarily living off oats and whey protein, not sure if the following remission was just coincidence though. I used to smoke weed and it gives me really bad anxiety, but maybe a pill form I could consider but my doctor probably wouldn't go for it, and then I'd have to deal with my job which isn't too drug friendly.

    Prednisone always eventually works but it mentally changes me and makes me greasy, full of acne, obese, and my joints feel brittle, like my left knee hurts some since I was on it for 8 months last time and have only been off it for about 2 months and still have residual acne that's popping up, takes forever to leave the system. I started a dose a couple days ago and the left knee pain came back a bit. I can't deal with prednisone for very long, really a pretty crude drug.
     
    Last edited: Jun 24, 2009
  8. METALLlC BLUE

    METALLlC BLUE New Member

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    Those drugs are dangerous. The Mesalamine may be more useful in Pentasa form. I found Asacol to be worthless as were the enemas.

    The VSL#3 is a lot more expensive than $60 per bottle. To get US or some forms of strong colitis under control you need to use at least 2 "packets" per day, so it's closer to 150 per month.

    If I was you, I would search for a top of the line doctor who specializes in the latest research. Accepting surgery without full investigation into other possible causes means you can't go back.

    A lot of changes are taking place in medicine with these diseases. There is no doubt it's an autoimmune disease, but an autoimmune disease that targets "very" specific bodyparts? Nah, it's an infection. Something that has an affinity for the large bowel.

    That's my opinion. If Crohn's Disease is being challenged severely and patients are recovering after 1-2 years of antibiotics, then it's critical you consider it.

    I'll leave it at that. I know exactly what it's like to be in your shoes. I was diagnosed with Crohn's Disease. I told everyone I thought it was bullshit, and that it had to have a cause. I was right. long long long long term antibiotics have helped, combined with high dose pentasa. They come in 500mg capsules. Take 4-6 capsules, 4 times per day until you get the disease under control in conjunction with the VSL#3.

    The reason the VSL probably reduces inflammation is because probiotics rebalance flora and some bacterial infections that are pathogenic cause autoimmune disorders, either from toxins, or from the presence of the chronic infection being present in the mucosa or lamina.

    If you throw an added punch and do manage to get antibiotics, Cipro and Flagyl are the two most famous for inflammatory bowel -- but other options that have shown promise have been Biaxen, Zithromax, and Rifampin or Rifabutin. More than one antibiotic should be given. 2-3 is preferred.

    Do your homework. It's your body and the risks should be considered. Remember, it's highly controversial, so the doctors you deal with will very likely be unresponsive.

    Best wishes,
    Mike
     
  9. deusexaethera

    deusexaethera OT Supporter

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    I have to think any doctor that would recommend surgery for a disorder that might be bacterially-instigated would be willing to throw some antibiotics down the hatch first; it can't possibly make anything worse. Better than getting surgery to turn your full colon into a semicolon.

    (pardon the terrible joke, I just had to.)
     
  10. Falconer

    Falconer OT Supporter

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    try smoking indica strain rather than sativa strain.
     
  11. kendog

    kendog Active Member

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    Is that a legal strain? Do you get high from it?
     
  12. kendog

    kendog Active Member

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    Well even if I do manage remission it won't last forever. I don't think I've ever really been in remission for more than 6 months the whole ~4 years I've had it. I also need to be on drugs in order to achieve this "remission". Not to mention colon cancer becomes a real issue later on after about 10 years of having the disease. I think the brain has a real way of tricking ones self out of surgery and trying to convince itself there is another way. This is probably why so many people wait so long before surgery, or end up in the hospital half dead and forced to do it. I think I will schedule the surgery soon. If worst comes to worst I will just get on disability and play PC games all day, doesn't sound that bad.
     
  13. Falconer

    Falconer OT Supporter

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    Weed has two strains, sativa and indica. Most weed that you find is a crossbreed of the two. When you buy weed on the street you have no idea what you're getting (unless your dealer knows where it's coming from).

    Sativa typically gives an energetic, mind high. You wanna go do stuff.

    Indica gives more of a lazy, body high, couch lock. You wanna sit there and chill.

    Many people report that indica is more effective at managing chronic pain, and in some cases sativa has been reported to worsen symptoms. I don't know if this applies directly to IBD, but I've heard about it for other chronic pain conditions.

    I'm not sure how the anti-inflammatory properties of indica vs. sativa are.

    edit - I believe if you live in California and have a medicinal marijuana card you can select from known strains at the clinics so you can see which works best for you and continue to use that.

    The prescription pill form is called Marinol and is available everywhere. I'm not sure if it's made from indica or sativa or what. I've also heard it's not as effective as smoking.

    They're also supposedly working on isolating the anti-inflammatory properties of weed and making a pill form out of that so people can take it without getting high. That would be super helpful for many conditions.
     
    Last edited: Jun 24, 2009
  14. Falconer

    Falconer OT Supporter

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    More info on this?

    Cipro is a ~floxin, right? I would stay the fuck away from those unless absolutely necessary. Some of the side effects (permanent) are worse than Crohn's.

    :werd:

    Look into other things. It's worth considering ALL options before you have surgery to remove parts of your body.

    There are some controversial theories for treating Crohn's involving the use of helminths (a type of parasite), various antibiotics, weed, stem cells, specific dietary changes, etc. I'm not sure how many of those apply to UC as well. Granted, 99% of them are probably not substantiated and are promoted by hippies who make up their own biological "rules" as they go along, but you never know. Hang out on IDB forums and talk to people about what has worked.

    I mean, obviously if you NEED surgery then get it. Don't let yourself die while lokoing for a cure, but it's worth your time to do obsessive research. Talk to your doctor. Talk to 10 other doctors. Go to the Mayo Clinic or Northwestern and see specialists. Email doctors who participate in clinical trials. Email researchers. Keep a food diary and keep a record of your pain and bowel movements. Look for correlations.
     
  15. Falconer

    Falconer OT Supporter

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    Hopefully there will be a cure before then :hs:

    Maybe they can take your cells and grow you a new colon. I heard something about this technology the other day.
     
  16. Pepsi1975

    Pepsi1975 Mod of the Year

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    I am not counting on it or hoping for it
     
  17. METALLlC BLUE

    METALLlC BLUE New Member

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    http://crohns.org/

    :Paratuberculosis Awareness & Research Association (PARA) is an organization of Crohn's disease patients, their families and others who are concerned about the relationship between MAP (Mycobacterium avium subspecies paratuberculosis) and Crohn's disease. PARA was founded with one ultimate goal in mind: Bring an end to Crohn's disease!
    Crohn's disease is a painful, chronic, often debilitating, inflammatory disease of the intestinal tract that affects at least 500,000 Americans, and millions more worldwide. That figure is based on extremely conservative estimates. Sadly, this condition can be termed "a disease of the young" because it primarily targets young people in the prime of life, between the ages of 15 and 25.

    Incorporated in mid-1997, PARA was formed because we became aware of scientific evidence suggesting that MAP may be causing Crohn's disease. At its inception, PARA began contacting a handful of highly regarded researchers and physicians who, despite little or no available funding, were valiantly, sometimes at their own expense, continuing to pursue the truth about MAP and Crohn's disease. (Today many of these researchers sit on PARA's Medical and Scientific Advisory Council.) Most impressively, these researchers were amassing a rapidly growing body of evidence -- evidence suggesting a causal link between MAP and Crohn's disease. In the past six years the entire story has become increasingly clear, and the evidence has become increasingly compelling."

    I don't recommend Cipro. It's the "conventional" drug that some doctors use for Crohn's Disease or inflammatory bowel conditions -- usually when ulceration/fistulas appear.

    The other antibiotic choices are discussed on that website I think. But the point behind what I was saying is basically to investigate even the cutting edge controversial science. When competing theories or ideas start showing up that have actual evidence behind them, consider them.

    Exactly. I've had to do that with my own situation. My situation was an infection and I'm still fighting it. It's a persistent bastard.
     
  18. Pepsi1975

    Pepsi1975 Mod of the Year

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    all this info about crohns is nice, but it not exactly the same as ulcerative colitis
     
  19. METALLlC BLUE

    METALLlC BLUE New Member

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    It's not the Crohn's Disease that should be focused on -- obviously since it's UC, but the point behind the issues surrounding Crohn's Disease. If one inflammatory bowel disease has a controversial set of circumstances surrounding treatment and management, then UC probably has alternative issues and controversies within the scientific community regarding the standard of care.

    I only was providing this info for Falconer on CD since he asked about the Crohn's/antibiotic connection - I don't want to get off-topic.

    My grandfather suffered from UC, but he died long ago from colon cancer. He had it shortly after arriving him during WWII.
     
  20. kendog

    kendog Active Member

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    I may be having mine removed at near the same age you did. How would you say your quality of life is with the J-pouch? Do you feel like you've missed out a lot on life or do you feel like you've gotten everything you would of out of life with some inconveniences?
     
    Last edited by a moderator: Jun 28, 2009
  21. Falconer

    Falconer OT Supporter

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    We have a president who isn't a bible banger now. Significant medical progress will be made.
     
  22. kendog

    kendog Active Member

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    Just found out my insurance covers VSL3d which is the double dose 900 billion count probiotics. Don't know why doctors never mention these things when they can probably only do good.
     
  23. METALLlC BLUE

    METALLlC BLUE New Member

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    Use as many as you can. They recommend different dosing depending on different inflammatory bowel conditions. Initially 2-6 packets per day can be used until the condition is under control. I've been on the VSL and noticed a change. Less pain and discomfort, less bloating and gas. Remember, probiotics of these kinds improve immunity, maintain the integrity of the bowel lining, prevent other pathogenic bacteria from gaining a footing, and they also convert vitamins like B12 so your body can absorb them. They also reduce inflammation -- probably a result of immune system modulation.

    Consider investigating the high dose Pentasa capsules with the beads inside. The drug is harmless and doesn't get absorbed into the body, it reduces the inflammation along the lining of the bowels locally. It will be covered by your insurance. Read up on it, it may stop this diseases progress in it's track.
     

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