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  • Dealing w/ Crohn's/UC frustration

    So my husband has Crohn's (according to his current doc...previously it was diagnosed as UC). He's starting to get pessimistic about the whole dietary aspect. He's still planning to stay on SCD/primal eating & it has helped significantly. But he's found that he can't really tolerate carbs right now, not even SCD yogurt. They all give him more diarrhea. He's been VLC the last couple of weeks (or zero carb if you don't count spices as carbs). Just meat & eggs & fat. No organ meats, he doesn't want the taste...He will try reintroducing a little more carb this weekend.

    He's starting to think this might be as good as it gets as far as how much diet can help. I'm not sure I agree, but it's not my body so what do I know. He's not as better as he'd like, he still has loose/watery stools (no blood) several times a day/night. (Not a lot, but frequent). He takes S. boulardii (probiotic), enzymes, a multivitamin, & vitamin D which have helped.

    Questions -
    Has anyone found a good broad-spectrum probiotic supplement that helps with a Crohn's-plagued gut (preferably one that doesn't have SCD-illegal bacteria/additives, if that even exists)? Enzyme supplement? (Just want to see what else is out there that people like other than the one he's taking - called ProZymes which is SCD-compliant)

    Any other suggestions for treatment? I know about the GAPS diet, LDN, fecal transplants (which you either try to do yourself or have the $$$ to get the legit procedure in Australia it seems). He hasn't warmed up to the idea of trying LDN just because it is yet another drug. He's currently on Cimzia, methotrexate, & prednisone. He recently tapered off the pred w/ his doc's permission, & is now having more pain. He's been on the prednisone for a WHILE and really wants to get off it, but it seems to be the most effective at preventing a full-blown flare.

    Does anyone know of a really good doc for IBD around here (Atlanta)? His current gastro is quite popular but his approach is very CW of course.

    One of his recent blood tests showed low albumin. The doc said it's usually from not eating enough meat. What?!? All he eats is meat.

    Any links to previous threads/posts would be fine. I found a couple of older posts that had info but forgot to bookmark them, argh. If I didn't write in enough detail just ask, I just didn't want this post to go on an on. Thanks!

  • #2
    Has he been at it long? I have bile reflux disease, and I am doing well (for me), but I wouldn't call myself 100% "normal" at this point. I am expecting it may take months or even a year or 2 to get fully better.
    Karin

    A joyful heart is good medicine

    He is no fool who gives what he cannot keep to gain what he cannot lose. - Jim Elliot

    Mmmmm. Real food is good.

    My Journal: http://www.marksdailyapple.com/forum/thread29685.html

    Comment


    • #3
      Originally posted by JKC View Post
      Has he been at it long? I have bile reflux disease, and I am doing well (for me), but I wouldn't call myself 100% "normal" at this point. I am expecting it may take months or even a year or 2 to get fully better.
      No, I think he's just frustrated now 'cause he's has IBD for several years and even in the few periods his docs said he was "in remission" he was still having moderate symptoms. As for the diet, he's been at it for 6 months but he lapsed a couple of months ago w/ a couple of beers. So he has only been 100% compliant for about 2-3 months...He doesn't like avoiding carbs either, he's annoyed by the sugar cravings & has days of lower energy/crankiness. I guess to him he's gotten a lot better but progress has stalled. And he's concerned about still being on prednisone. He's not the most positive guy on the planet, SCD/PB has actually helped his mood a lot and seems to have gotten rid of his anxiety attacks but some days he just doesn't think he is going to get any better quality of life.

      Comment


      • #4
        I'm really sorry to hear that. Crohn's is tough. I had UC from 1986-1991, was on prednisone 2 years, then got the j-pouch.

        I hope he can find something to help avoid the prednisone, but sometimes you can't avoid it.

        I'm not sure why he wants any carbs at all? Just avoid them. I take it he already knows to avoid gluten, too.

        I would highly recommend this site for advice... The J-Pouch Group. Go to the forum. It has UC patients, Crohns patients, and a lot of people who have been there, done that. I quit going because I got in too many arguments with some of the CW buttheads, but you can still learn a lot there. Just don't mention Taubes.

        As I'm sure you know, finding foods that are not troublesome is hit and miss. One just has to experiment.

        Comment


        • #5
          Originally posted by DFH View Post
          I'm really sorry to hear that. Crohn's is tough. I had UC from 1986-1991, was on prednisone 2 years, then got the j-pouch.

          I hope he can find something to help avoid the prednisone, but sometimes you can't avoid it.

          I'm not sure why he wants any carbs at all? Just avoid them. I take it he already knows to avoid gluten, too.

          I would highly recommend this site for advice... The J-Pouch Group. Go to the forum. It has UC patients, Crohns patients, and a lot of people who have been there, done that. I quit going because I got in too many arguments with some of the CW buttheads, but you can still learn a lot there. Just don't mention Taubes.

          As I'm sure you know, finding foods that are not troublesome is hit and miss. One just has to experiment.
          Thanks for the sympathy. It's a vicious cycle because stress triggers the flares, which causes more stress...sigh.
          He avoids gluten & sugar like the plague. He loves fruit & nuts which is why he is missing the carbs.
          He did look into getting the J-pouch, but didn't like what he read from others' experiences so that's why he tried changing his diet instead. His gastro & primary doc don't think he needs surgery right now. His previous gastro wanted to do it but back then he was flaring badly and eating junk. I will ask him again about it and see if he's still planning to avoid it for as long as possible.

          What did you argue with the CW believers about? Eating fiber (that's what I would guess)?

          Comment


          • #6
            Funny, I was just going to mention stress. I know that it was a very big contributing factor to my digestive issues. I needed to deal with some of the issues that were causing my stress, do some work on anxiety issues, and learn how to "reframe" my circumstances - looking far more at the positive side - I was addicted to negativity. Perhaps if he can get some solid work done on the stress issues his tummy might get even better.
            Karin

            A joyful heart is good medicine

            He is no fool who gives what he cannot keep to gain what he cannot lose. - Jim Elliot

            Mmmmm. Real food is good.

            My Journal: http://www.marksdailyapple.com/forum/thread29685.html

            Comment


            • #7
              If it's really Crohn's, you don't want the pouch. Pouchs are a fix for UC, but if it's Crohn's the inflammation spreads to the pouch and it fails. If it's UC, there is usually no reason to avoid the pouch. The problems are minor compared to living with UC.

              Mine was reasonably trouble-free for nearly 20 years, but in Dec, it developed a small hole. Sounds easy to fix, but one problem led to another and I have been in the hospital a total of 28 days since Dec, 3 trips, and 2 surgeries, with 2 more to go. Still I would do it over again.

              Anyhow, on that site... It got a bit crazy.. First I responded to someone who just had a new pouch, and was anxious to get back to exercising for fear of gaining weight. I said don't worry about it, diet controls weight, not exercise (the Taubes thing) and this one member went out of her way to try and prove everything I said wrong! Then I posted a gluten warning, and it turns out that my new stalker is a rep for Metamucil wafers, which have wheat flour-exactly the wrong thing! She's been on the site for years, so now I have aggravated the old timer, and she has a small group of followers that jump on anything I write. I just gave up and left..

              Still, I highly recommend that forum to gather some facts about UC and/or Crohn's. Just don't talk Primal or the Metamucil wafer lady will call out the troops...

              Comment


              • #8
                Some other tips, maybe you knew this...

                Any IBD patient needs a good B complex supplement. I would also consider L-glutamine. Read the wiki entry on it, very interesting.

                Crohn's means constant inflammation. This taxes immunity and causes fatigue. Google Dr Mark Hyman on this stuff. Also, good sleep is critical. I would use melatonin to get better rest.

                The chronic stress will wear on the adrenals, and prednisone will make it worse. Read up on adrenal fatigue too, Dr Harris's book is good.

                Good luck. There are many things you can do if you know where to look.

                Comment


                • #9
                  OK, one more.. If stress is a trigger, there are a lot of supplements to try- L-Theanine, GABA, 5-HTP, kava kava, and if those don't help, ask the doc for Atavan. It doesn't have nasty side effects, and it does work! It's way better than a flare-up.

                  Comment


                  • #10
                    Originally posted by JKC View Post
                    Funny, I was just going to mention stress. I know that it was a very big contributing factor to my digestive issues. I needed to deal with some of the issues that were causing my stress, do some work on anxiety issues, and learn how to "reframe" my circumstances - looking far more at the positive side - I was addicted to negativity. Perhaps if he can get some solid work done on the stress issues his tummy might get even better.
                    He's been thinking about seeing a therapist for stress management. I don't know why he hasn't started seeing one yet! It's like you need to push him, but he's stubborn so he won't really do anything no matter what anyone says until he decides to actually do it. Maybe a guy thing. We are sort of in a stressful period w/ job & money stuff. He has relatively less stress compared to when he was a lot sicker pre-diet change. But I think he could definitely use help with finding a more positive perspective.

                    Comment


                    • #11
                      He took Ativan (small dose) for a while when he was having frequent panic attacks. It did work but turned him into a zombie! I will look up those other supplements. I forgot about the L-glutamine. Good call.

                      Originally posted by DFH View Post
                      OK, one more.. If stress is a trigger, there are a lot of supplements to try- L-Theanine, GABA, 5-HTP, kava kava, and if those don't help, ask the doc for Atavan. It doesn't have nasty side effects, and it does work! It's way better than a flare-up.

                      Comment


                      • #12
                        You could use less Atavan I guess..

                        When I went in for a pouch surgery 3 weeks ago, I brought a tub of low carb whey protein with lot of L-glutamine added, my own blend. They had me on liquids, which were just insane.. High calorie Ensure 3 times a day, with 51g carbs in each small can! No way.. I gave them all back, and asked for lots of ice water to mix the whey protein/glutamine instead..

                        Comment


                        • #13
                          Originally posted by DFH View Post
                          If it's really Crohn's, you don't want the pouch. Pouchs are a fix for UC, but if it's Crohn's the inflammation spreads to the pouch and it fails. If it's UC, there is usually no reason to avoid the pouch. The problems are minor compared to living with UC.

                          Mine was reasonably trouble-free for nearly 20 years, but in Dec, it developed a small hole. Sounds easy to fix, but one problem led to another and I have been in the hospital a total of 28 days since Dec, 3 trips, and 2 surgeries, with 2 more to go. Still I would do it over again.
                          That says a lot if you would still do it over again! He's trying to avoid the surgery, 'cause it's not super clear if it's Crohn's or UC. His current doc thinks he has Crohn's, everyone prior thought it was UC or indeterminate. He tried to have the test done where you swallow a camera to see what's going on in there, but our insurance denied it because they found it to be medically unnecessary.

                          Anyhow, on that site... It got a bit crazy.. First I responded to someone who just had a new pouch, and was anxious to get back to exercising for fear of gaining weight. I said don't worry about it, diet controls weight, not exercise (the Taubes thing) and this one member went out of her way to try and prove everything I said wrong! Then I posted a gluten warning, and it turns out that my new stalker is a rep for Metamucil wafers, which have wheat flour-exactly the wrong thing! She's been on the site for years, so now I have aggravated the old timer, and she has a small group of followers that jump on anything I write. I just gave up and left..
                          Crazy...My husband took Metamucil (or some other brand of the same thing) upon a doc's suggestion way back when he first got sick. It didn't help anything.

                          Comment


                          • #14
                            Bummer.

                            You WANT it to be UC, because then a pouch will give him a new start on life. The surgeries are no picnic, but being well again is worth it. You must make sure it's not Crohn's though. The main cause of pouch failure is a misdiagnosis of UC, when a patient really had Crohn's.

                            I hear that Vanderbilt in Nashville is quite good, BTW, if you want a new opinion. The most often recommended is the Cleveland Clinic.

                            Comment


                            • #15
                              I have chrohns. heating pads help with the pain, and epsom salt baths really help with stress. Magnesium spray works really nicely too and doesn't upset the stomach like citrate can. I'm only on asacol though so it doesn't sound like mine is as severe. It was pretty bad in the beginning. I was diagnosed 8 years ago.
                              My journal where I attempt to overcome Chrohns and make good food as well

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