Fibro, leaky gut, crohn's, ulcerative colitis

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Nov 18, 2006.

  1. MamaDove

    MamaDove New Member


    I dunno where I am going with this post, I only know I NEED some answers and fast...

    I have had UC diagnosed 1995 after taking nsaids and zoloft for a neck injury, I was sure this caused my bowel problems...I fought the doctors and always told them I would get to the bottom on it (no pun intended)...

    The fibro came along with swelling and abdominal issues were quite common although several times I took Asacol for bouts of diarrhea and slight bleeding...The asacol and everything else I tried had side effects and I also felt like everytime I took a drug or a supplement, I was being poisoned...But I was told by everyone that UC was common and could be controlled and I just had to deal with it, take meds and continue to work and live my hectic life just the way I always had done...

    1997, my gall bladder almost burst and was removed laparoscopically after years of recurring upper abdominal pain that the docs never could diagnose...until it was too late...and never once in all the years of going to gastros did they ever tell me about dietary changes because of gall bladder removal and having the uc for so long...it was like, let her do what she wants and when she flares, shes back for some more treatment...

    Now fast forward to last year when I had a terrible flare and the asacol seemed to make it worse but my doc doesnt want to hear of it...i tell him my abdomen swells and stools get dark and muddy and more disturbing is that these lil pills get stuck in my throat, no matter what I do, I now feel it is my bodys way of not letting it in in the first place...

    I was just in the hospital for 6 days due to a "Crohn's" flare and if I tell you that the asacol came out whole and one even blew up in my esophagus somewhere causing me much pain and panic...I finally told my doc to never mention it again to me...He still disagrees that the side effects are from asacol...

    Now today, I am home for 3 days, nursing myself, eating VERY well, esp. compared to that salty preservative filled hospital food and resting along with weaning off cipro and prednisone cause it seems to be CAUSING me problems and not helping me fix anything...Once again, the bleeding has started and this morning I had this urgent need to evac (which I did) and I felt so sick afterwards I grabbed the wastebasket and out came some yellow fluid (which tasted just like the vicodin I tried to swallow the night before to make sure I slept)...I have to say after this bathroom run, I felt wonderful, like I expelled something evil and now it was gone...

    I then took my cipro and 30mgs of pred and within minutes was hugging my pillow feeling like death...that lasts a few hours and is quite scary too, its like my body shuts down...immune system wise that could be a good thing and what the pred is supposed to do but one knows when you feel like you are 'dying' and thats what it feels like to me...

    Well, hubby brings me the computer and I start snooping and I run across someone talking about how leaky gut is responsible for the diagnosis of crohn's, uc and all the symptoms of fibromyalgia, which is believed to be caused initially by leaky gut syndrome...Now dont shoot the messenger please, just letting you know that this got my attention...

    I have always known that all of my illnesses were connected and one led into another and now I think that more than ever and this is the reason why...I HAVE HAD NO FIBRO SYMPTOMS since this so-called crohn's attack...The arthritis, the myalgia, the cognitive, the joint pains the tender points, everything, gone...But it's like it all went into my belly...Wierd swelling and tenderness esp. in all the areas I have had surgeries...my hysterectomy incision swelled and burned upon touching, the laparoscopic scars from the gall bladder were all tender to the touch and like lumpy feeling, my right hip where they took the bone out for my graft in my neck, sweels and burns uopn any exertion for the past few years and noone addresses it and the areas that surround the left, right and transverse colon all swell and are tender esp. at the end of each day...

    How come the docs don't find this interesting? My husband and I do...I am now fishing for answers about this leaky gut thing and find that there are tests that can be done to determine this...I know one is to send to Great Rockies something or other and I know we have discussed that here before but then there is also a test called TNF~alpha (Tumor necrosis factor) that can give me answers esp. if I decide to have another colonoscopy and give in to the final diagnosis of Crohn's, therfore possibly choosing Remicade over the other drugs as far as efficacy and less risk...Remicade is the only drug that inhibits the protein that causes the inflammation and is found in the TNF~alpha testing...why has my doc never run this test yet he threatens me with remicade and that imuran that I wouldnt take if it were the last resort...I know some are on it and i am glad that it helps some, but i took one pill and my insides tossed it out and the more i found out about it, the less I would entertain the idea of taking it...yet all these docs push these drugs without ruling out everything else, even just the simple things like food allergies they have yet to mention to me...They just keep reminding me I have Crohn's Colitis and thats what the tests show and thats that...

    So hopefully I wont suffer much more over the weekend, and come Monday I will ask my docs nurse to order this TNF~alpha test, thats if its done up here and done correctly along with sending out that leaky gut test for some more definitive answers...I just cannot understand if there is a test to assure it is crohn's brought on by leaky gut more likely than not and the test also would determine if remicade should be the drug of choice, why isnt it in their protocol, esp. when hospitalized...I had so many scans done that wouldnt have been done because my husband went home each day and night and researched when I couldnt and came back with his idea that I have bile acid issues due to the removal of my gallbladder (the severe pain that got me in the hospital mimicked the pain prior to gall bladder surgery, hence his thoery)...

    I dunno what I am trying to find, why wont I just listen to these docs and take their advice and their drugs and be done with it...I know why...cause every drug I have ever put in my body has given me something else and just covered the symptoms, never realy finding the reason for my problems, just give me a new disease and a new treatment for it...Well, this time my options are all life-changing/threatening esp. if I choose the chemo option for the Crohn's...I need to act soon in any event cause I also know how this can turn uglier than it is now and then am faced with removing peices and parts...that never goes well for me either...every operation for me led to more issues too...i cant seem to win here guys...

    Maybe this was a vent, maybe I just wanted to document what I have been torturing my brain with for the past weeks, months and years of having all these dd's or maybe someone will come along and share the same story and have an answer for me or I for them...I just know the only bit of energy I have in months I spent on this post...My hubby is watching over me but has yet to tell me to slow down while writing this...after I am done he will say "God, you were smoking, hope it came out all right"...He is my night in shining armor and as bad as I feel I have him next to me to fight on...I just hope that I dont have to go back into the hospital and watch him go through more of this mess...we so need a space in time without severe health problems...I would so give my right arm to spend a weekend in bed with the 'flu'...The past few weeks all we hear are people that are complaining of colds and their oil bills and no money for xmas shopping...boohoohoo...everyone crying and complaining about things that mean nothing in the grand scheme of things yet it's always so easy to do...And when they hear about what you are going through, they only offer short and quick statements like, "they have a medication for that" or "take it eeasy, everyone seems to be sick lately"...UUUGGGHHHHHHH...No wonder we never seem to get answers, NOONE IS HEARING WHAT WE ARE SAYING!!!!!

    Well, nite for now, I dunno when I will be back, I generally dont take this in the bathroom with me and thats where I spend most of my time along with my recliner and bed...I am much better than last week and for whatever care I recieved I am grateful but arent I entitled to the TRUTH and the answers that should come along with it? Maybe I am asking too much, but it would be nice...

    Love to all~Alicia
  2. Catseye

    Catseye Member

    What exactly are you eating and drinking, for each meal? karen
  3. Rnclegal

    Rnclegal New Member

    Alicia

    The FIRST thing I would do ( and Ive been a nurse for over 25 years) is CHANGE DOCTORS. You need a doc who is interested in you and on your side. You are the consumer (patient) and you deserve better care than what you are getting.


    Carolyn
  4. MamaDove

    MamaDove New Member

    I see you are contributing quite a bit to this subject on many posts...I just read where terrys questioned leaky gut too...I remember when she first posted about her diagnosis of biliary cirrhosis, something got my attention...

    You asked what I was eating, Im asuming that would be now...before I ate anything for months at a time even the no-nos for IBD such as seeds, spices, veggies, the stuff the experts tell you could be problematic...I for one, never did believe I had UC/Crohn's but that it was the end result, at least the colonoscopy and pathologist reported such...

    Anyhow, back to foods...right now I am eating eggs, chicken, tuna and sockeye salmon for protein...Boiled potatoes (which I see I shouldnt be eating with protein cause their starch?) steamed broccoli and carrots, apples, bananas and pears,melon, cottage cheese and yogurt...No milk or butter, nothing fried and trying to buy the BEST of each and anything organic...I did try my usual pasta the other night and woke up to bloody diarrhea and vomiting up yellow fluid...Oh yeah, I cut bread out altogether too...I am drinking decaf teas, some flavored and may add some honey at times, also diluted apple and white grape juice too and lots of well water...
    Hubby just keeps rotating the above foods and trying to make it interesting but heck while in the hospital it was salty, preserved foods and because of the prednisone I ate it all like a champ...tehe

    I am taking 500mg of L-Glutamine since being home and would consider starting my PB8 probiotics again if I knew they would help...I am interested in the enzymes you speak of and the other thing , betaine hcl?, what is this? I will prob google it by the time you see this...

    I know my liver is in trouble, my levels have always been slightly elevated and acceptable by my doctors, but when I eat certain things it twinges and burns along with when I have a flare of fibro or whatever my underlying condition is (autoimmune is my guess), I am a tinge of yellow, which only my husband and I can see...

    I said in the beginning I will be getting another test done, that leaky gut test along with the TNF~alpha and then make my nect move...You have certainly had some life-altering and scary experiences...While I was in the hospital last week, I too had some scary 'visions' that I think were more than dreams, they were insight into what WILL happen if I continued down that path and I had to gain the strength to make the right move and get out of there...I KNOW it saved me from getting worse but I still have bleeding and diarrhea, once daily and the swelling has gone down considerably...I still have these annoying back and rib pains, very slight and dull but their there...God I want the answers before I resort to giving into one of those drugs that will certainly take me down further...No matter how good my outlook is going into a treatment, I am always a loser, and usually with side-effects and ill-effects that noone ever heard of before...YEAH RIGHT!

    I hope to read more about what you have been through and what you continue to do to get better...You're a strong-willed woman...Must go for now, its my most tired time of day...Wishing you a bright day :)
    [This Message was Edited on 11/19/2006]
  5. joeb7th

    joeb7th New Member

    Mamadove, in your original post you are describing me?

    Everything from the asacol to everything else you mentioned. Your symptoms sound exactly like mine too.

    I also hug pillows.

    I wake up so sick, sore and in pain. I mean, if anyone who has never had this on this level were to all fo a sudden feel this for one day, most would be rsuhing to an ER and pleading for them to do something.

    I live with this 24 hours a day. And the ER's I go to just offer me lydocaine with Mallox and a sedative and/or call in the psych ward and then send me home in 3 hours.

    This experience truly, truly, truly is a nightmare. Not only physically, but mentally and socially. Most people treat you like a mental case.

    I was not a church goer all my life.

    But I pray constantly. I do not get answers...but I keep praying. There are times.....I am not sure what to do.

    If you know what I mean.

  6. MamaDove

    MamaDove New Member

    I remember you writing on my original post when I went in the hospital, even through that drug induced coma they had me in, I thought about what you wrote...

    It is awful what we are going through...While in the hospital, I begged for anything but that pain and bleeding and uncertainty and FEAR of not knowing what was next, but I knew it wasnt going to be good...I prayed for the fibro flare from heLL, anything but what I was going through...

    The answers are coming, they've just got to be...I am getting to know some great people with open minds and hearts (and not looking to fill their pockets) in my fibro support groups...There is someone who will put this together, if not one of us here...Imagine all the suffering this will stop??? I want to say something negative about industires in general, but I promised my hubby I would keep myself calm and forego the need to 'rationalize' and place blame on the bast%^*( who make their livings on others misery, so I must be good...I finally got my blood pressure down and pain levels to a minimum just by coming home and exiting that giant brick building owned and operated by corporate America...What happened to caretakers and people who healed? I guess thats why the lucky ones had their own private people in their rooms making decisions in their best interest...Okay, nuff for now...I hope someone hears all of us screaming out for help, but like you said, they think we belong in a rubber room...I recall in the beginning being told it was 'all in my head'...Sorry doc, you were wrong...AGAIN!!!

    Smile today, someone is watching you :)
  7. Catseye

    Catseye Member

    Hi, there's some things I would change about your food. After painstaking attempts and failures at all sorts of food:

    no more mixing starches and protein. Eat starches alone or with veggies. Look up food combining.

    Get rid of all dairy for now, not even yogurt or cottage cheese. It's too hard to digest and hard on the liver for some.

    No pasta, it's just like eating bread. In fact, no wheat at all in any form.

    If you eat fruit, eat it alone. If you eat melon, eat it alone without any other fruit.

    Try to slowly work up to 5 grams of glutamine every morning, 1st thing.
    This will help repair the gut lining.

    Yes, get some good probiotics like primal defense or something.

    Betaine hcl is just stomach acid, basically. Use it whenever you eat protein, I can't eat chicken or any meat without it. it doesn't burn or anything. If it does, take less or if you feel too full from eating protein, take more. I take a 600 mg pill whenever I eat protein. Which I only mix with veggies.

    I know these are inconvenient as hell and suck but they'll work. You may not have to do this forever, I don't think I will, just for now until our guts are restored to prime operating condition!

    And eat several small meals during the day instead of 3 big ones. What I do:
    more or less
    morning: veggies or rice and beans

    an hour later: chicken and veggies

    2 hours later: starches and veggies

    an hour later: fruit

    an hour later: chicken

    2 hours later: starches and veggeis

    hour later: fruit

    hour later: rice and beans(starches) and veggies

    hour later: chicken and veggies or rice and beans(starches)

    You get the idea.

    good luck, I literally feel your pain, karen

    [This Message was Edited on 11/19/2006]
  8. Catseye

    Catseye Member

    You can consume more veggies if you juice them but start slow and see if you can tolerate it. Only an ounce or two at a time, not a big glass. But I needed to eat just cooked food for awhile before I could do this. karen
  9. MamaDove

    MamaDove New Member

    Thank you for taking the time to tell me in detail what has helped you...I will start tomorrow adding the smaller additional PROPER meals and add PB8 back too...Hubby is on the rice and beans thing, he allready has the cookbook out to make it more appetizing...I can't wait to feel better, keep your fingers crossed for me...I may just keep the yogurt going for a few days more only because I am Cipro and fear yeast, which just may be a big part of my problem anyway...Well, here goes...thanks hon, I appreciate all the info!!!
  10. Catseye

    Catseye Member

    Dr. Cheney says to use MSM for detoxing and it also kills yeast. I've been using it for about 2 weeks now and it's really making me feel better. You should try it instead of the yogurt, you really need the dairy out of your system. Plus if it's like Yoplait or those yummy ones, they're practically useless for health. MSM is methylsulfonylmethane, but don't let the name scare you. It's a natural compound in all plant and animal tissue but it's destroyed easily by processing. It binds to toxins, promotes digestion and absorption, kills yeast, too many good things to list. Look it up! The only side effects are sickness from detoxing too fast if you take too much. I take 2 grams a day right now. Start with 500 mg or 1 gram and increase in a few days. Cheney says to work up to 6-9 grams a day. This stuff should make anyone feel better and it works the same day. karen
  11. chubby

    chubby New Member

    Hello Alicia,

    I've had UC since 1994. I took Pentasa for about eight years until the side effects became so bad I had to quit. Luckily at that time I ran across information on the internet showing that powdered Psyllium seed (not just the husks) was very benificial to people with UC. A study done in Spain showed it kept 60% of the participants in remission.

    I've been using it for over five years now, and my UC is hardly noticable. I take about a tablespoon mixed with water three times a day. It's all I take for my UC. It would probably be worth a try for you.

    I've had a lot of trouble the last few years getting powdered seed that works properly, so I grind my own from the whole seeds. The proper veriety of psyllium is Plantago Ovata, or blonde psyllium.

    Psyllium raises levels of butyrate in the colon. Butyrate is the main food source for the cells lining the colon. High butyrate levels have also been shown to reduce the risk of colon cancer.

    If you google psyllium, butyrate, and ulcerative colitis in various combinations you will find more information. Here's a link to the results of the Spanish study.

    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10022641&dopt=Abstract

    Good luck. Sorry you've feeling so bad. Better times are probably ahead.

    Chubby
  12. MamaDove

    MamaDove New Member

    msm and psyllium on the list...

    ive only ever eaten stonyfield farms organic yogurt and when the menu came at the hospital and I checked yogurt i just assumed it would be comparable...well surprise, it was something like garanimals starwberry, full of sugar and crap...my god did I scream!!! also,the juices in the hospital were either carbonated or had artificial sweeteners in them...i told the nurses and they looked at me like I had two heads...what is with these people? I must also start juicing at least my fruit for juices, most of the juices today are full of 'stuff' too but I have an extra supply of knudsens organic black cherry juice that I should use up, hope that wont hurt in any way, was supposed to be for inflammation, just never got through I guess through all the other poisons I was ingesting...

    My goodness, the more I google leaky gut diet and symptoms, the more I am CERTAIN this is the right path...UC, Crohn's, Fibromyalgia, Inflammatory arthritis and all the other diagnosis I have been given since I got sick and miserable are all taking a back seat now...The last few months I resigned myself to living WITH and AROUND my dd's, now I am gaining the momentum again to FIGHT and find the real cause...Shame on them who told me I would have to live with all these things and do the best I could with what path God chose for me...I was born with the knowledge that noone is going to help you but YOU and I have now got that mindset back, thanks to ME, not some higher powere and def not no doctors...Geez, I am angry still, but when I sit back and take what is given me, I dont do well, I end up in the hospital without a clue!

    I have read today all the toxins in foods, what kills us and what we thrive on and you dont have to knock me on the head, I will not ingest anything that could poison me...If I could quit smoking and drinking, I can completely clean up my diet...It would be hippocritical of me since I am BIG on the belief of you get what you give...I have zero sympathy for others who complain of certain health issues yet clearly arent doing the right thing...Now is my turn, practice what I preach!!!

    I never want that pain back nor the feeling of heading down that long bright lane feeling like I am never going to see my husbands beautiful face or watch my boys sleeping next to me...I need another 13 years to have some happiness to make up for the last 13 of HeLl...

    Thanks girls for helping me turn this around...I've allready dropped 15 pounds but thats inflammation for sure, the fat should come off easier with all this good stuff going in...Hubby gonna try and get me out shopping, even if I have to use a wheelchair...I can only walk to the mailbox and barely make it back with my cane but I'm gonna try all I can...Imagine whatever this was has caused me to barely walk and need a cane...I am pissed and I'm not gonna take it anymore!!! Love to all~Alicia
  13. Gosia

    Gosia New Member

    Hello Alicia.

    All my health problems stared with my stomach. Now, I have Fibro and all the symptons. Hundred times I asked myself what happend? The doctors have no answer, can't help me. Recently I'm being a doctor for myself.

    My doctor ordered the test from Great Smokeys ( old name).
    So next appt. I do the test.

    To help you, I would really watch the diet, do the tests, check for hepetites( my mother was yellow too).

    One day, I didn't eat anything ( only drink a lot of water) to see how I feel. It was a big diffrence. So I know that the stomach is the key answer for me. Pls,don't do what I did, could be danger for you. I did out of desperation.

    I hope this help. Gosia

  14. MamaDove

    MamaDove New Member

    sitting at my kitchen table after a morning of bleeding in the toidy and couldnt possibly get more than a sentence out right now...have to concentrate on pill taking and deit modification along with contacting the right rejects this morning and get the right testing done, not what these jackass docs say to do...

    my health is in MY HANDS and thats where its going to stay!!! 13 years of listening to their crap only to support them...Enough is enough...

    Barrowinnovations has inspired me to finally look ONLY to diet, we Americans are dumb, dumb, dumb...Supporting big corporations, what are we thinking?

    My anger is going to get me better or kill me, I am rooting for the cure!!!

    Love to all, Ill be back when I can, Alicia