Crohn's -- how do you cope?

Discussion in 'Fibromyalgia Main Forum' started by ume, Oct 7, 2005.

  1. ume

    ume New Member

    Hi Folks,

    I am writing this in the hopes of some advice for my friend. I have CFIDS, but she has just recently been diagnosed with FM and Crohn's. (She also has had Meniere's for years, so this is her third autoimmune illness.)

    She seems to be coping ok with the FM and I can help her a bit there because some of our symptoms are the same.

    But the Crohn's diagnosis has really overwhelmed her. They have her in the hospital for a month ! while they do tests, etc.

    I have IBS, so again, I can help her a little bit, but I realize Crohn's is much more serious.

    What I would love, is any advice from those of you who have Crohn's. What has been your experience, what has helped? How do you cope?

    I am hoping for anything positive I can relay to her to give her some peace of mind, though I would appreciate anything people could tell me. I will 'edit' what you tell me, if I need to, not to scare her right now.

    Thanks so much,

    Ume
  2. ume

    ume New Member

    just bumping -- hoping for some replies...
  3. ume

    ume New Member

    thanks for answering, anyway, Mable!

    Ume
  4. libra55

    libra55 New Member

    Hi Ume,

    I am just learning to cope. I was only diagnosed less than a month ago. Since last December I had 3 hospitalizations for "Intestinal Flu". This time I had all the symptoms of full-blown Crohn's flare up. It started the week before my kids went back to school, there was so much to do and I thought it was a FM flare, so just pushed through it.

    Then I began to run this fever, which I could not get rid of, and the watery diarrhea, so my GP put me on antibiotics, which did not help. This went on 2 weeks. Then I broke out in mouth sores and body sores, and my joints all fused up on me, and I was in terrible pain. At this point we got the gastroenterologist involved, an emergency hospital admission, colonoscopy which confirmed Crohn's, they said I had it from 5 to 10 years.

    I am home, and on prednisone 40 mg a day (tapered down from 60), I am doing OK with it. Eventually I am going on 6MP (mercaptopurine), an immunosuppressant drug. I am extremely nervous because it will be flu season by then and I will have no immunity.

    Is your friend on any medicines for Crohn's right now? If she is in the hospital a month, her disease is probably pretty out of control right now. They kept me 5 days, after that I went home and was a couch potato for a month. The hospital is the best place to be for her right now. They will stablize her, get her rehydrated, get some potassium and magnesium into her, administer antibiotics, start some anti-inflammatory medicines (probably steroids), and run a lot of blood tests while they formulate their game plan.

    When I came home I couldn't do much of anything, and she probably won't be able to either. If she can get some help with meals and laundry and all that mundane household stuff that's great. Also rides to places, I couldn't/didn't want to drive for a while, I was afraid I'd pass out at the wheel. I'm out and about now, but taking it easy.

    Basically I am told this is a manageable disorder, but there is no cure for it. I was told Crohn's patients require 30 percent more protein than the average person because we do not digest our food properly. I was so malnourished my hair was beginning to fall out (as I had posted to this site a while ago).

    So here is what I am doing. Plenty of lean meats - chicken, turkey, fish. Eggs, too. Easy on the carbs. Fresh fruit but not too much. Vegetables well cooked. Potatoes, but NOT the skins. And tons of good quality water. No coffee, tea, soda, or alcohol.

    My doctors also have me on folic acid, iron, and vitamins in addition to the prednisone. My blood levels are monitored every 10 days, for my sed rate and to check my iron levels. I was bleeding internally and was unaware of it. (I take a stool softener Colace to counteract the effect of the iron).

    I have also heard that aloe vera juice is very healing to the colon, so I might try and add some of that by way of a holistic remedy.

    As far as coping mentally, I sometimes do feel a little depressed as I know I am making progress but I have a long journey to go, and I must change the habits of a life time which is not an easy thing to do.

    I hope this is helpful. Let me know if you have any other questions and I will try to answer them as best I can, as I am just learning.

    Michelle
    [This Message was Edited on 10/08/2005]
    [This Message was Edited on 10/08/2005]
  5. ume

    ume New Member

    Michelle,

    Thank you so much for taking the time to write such a detailed, caring message. I will show it to my friend and if she has any more Q's, I might ask you more, if you don't mind.

    I think what you have said will be very helpful to her. The complication for both of us, with our illnesses, is that we are not living in our home country, so we are never sure what they are doing here is what would be done in the US. Just to know what you are doing for your Crohn's, and that there ARE things she can do for herself (diet, etc) will help.

    Michelle -- my heart goes out to you. Having 'just FM or CFIDS' is enough, but now you have something new and scary to deal with. My thoughts are with you. Keep your spirits up.

    Hugs,

    Ume
  6. winsomme

    winsomme New Member

    i really don't know much about this disease, but i know that one med that i am taking is supposed to help with Crohn's. i believe they even did a study with it at Penn State.

    low dose naltrexone

    here is a link:

    http://www.lowdosenaltrexone.org/

    also, here is link to a website that discusses different supplements for all kinds of conditions:

    http://www.wholehealthmd.com/hc/resourceareas_supp/1,1442,556,00.html

    copy and paste the link or just go to www.wholehealthmd.com

    this is a link for crohn's, but this website is a great refenence for many different supplements and conditions.

    finally, i think i have read about a possible bacterial cause of crohn's that might be helped by antibiotics.

    look into something called the "marshall protocol" which is a low dose antibiotic therapy for autoimmune conditions.


    [This Message was Edited on 10/09/2005]
  7. libra55

    libra55 New Member

    Thanks for your kind message. One other thing I forgot to mention, so obvious but forgotten in all the things I wanted to say...the Web. When I got home from hospital I just went online and researched all different websites on Crohn's, and just read as much as possible to educate myself.

    I printed out stuff for my husband as he is sometimes clueless(!), he seems to think this is some kind of a viral disease that will just go away by itself, and I need him to know that it is lifelong and needs medical management.

    I was treated at a great small hospital, and yet I think there is good medicine practiced all over the globe. The doctor who saved my life comes from Iran and was trained in that country. I do hope it's the same where you are as you mentioned being out of country. I think the most important thing is to be proactive with these doctors in our own care.

    Michelle
  8. segrin

    segrin New Member

    Hi Ume,
    Sorry you have this nasty disease. Not to be the bearer of bad news but, I have a close friend who developed it after Radiation treatment for Breast Cancer and she has gone through a long hard road with Crohn's (several years now). First she did all the diet changes, then meds and all failed so she had to have her colon removed and had a bag to wear and in the mean time she had a J-pouch made so she could get off the bag and resume some what of a normal life but that also failed and had to have it reversed and eventually went back to a bag this all has been going on for several years and the last operation she had to have has yet to heal. I wish you and your friend the best she will need your support, and understanding (the gas, smell and bloating will be hard on her also with all the bathroom trips she will and have to do) it is going to be a long hard road but perhaps she will be one of the fortunate ones and have some good treatment.

  9. ume

    ume New Member

    Thanks so much, everyone.

    winsome -- thanks for taking the time to cut and paste those links. very helpful.

    libra55 -- you mentioned the Web, too. My friend is a journalist and normally spends practically all day online, so this is something she will be able to do well. I've been doing it for now for her, but she will soon have her computer in her hospital room. (doesn't that just suck -- surfing the Net in a hospital bed?!)

    thanks, too, Michelle, for the encouraging words about doctors the world over. I know this is true, but both of us have had horrible experiences here, so we are natural pessimists. Her doctors seem to know what they are doing, though.

    segrin -- I am so sorry to hear about your friend. What a hard time! I have read, online, stories like that, and I am worried my friend may be in for something like this because she let it go so long and it will be hard for her to do all the diet changes.

    BUT -- she has a wonderful husband who will be totally there for her emotionally and friends who love her dearly. Also, she works from home, so that is a blessing, in a way.

    It is still scary, but I feel better with information and with all the input you have given me. I am sure she will feel the same. thanks!

    And I will encourage her, since she was just diagnosed with FM, to join this messageboard, full of warm people.

    Ume
  10. jenemc

    jenemc New Member

    I was dx'd 5 yrs ago with crohns. Let me tell you it is not a nice thing to have.
    Foods that can and will affect you are: popcorn, nuts, salads, raw veggies, dairy products, red meat... chinese food hurts me. it is basically a trial and error diet. everybody is different. sometimes, i can eat popcorn others i will end up in the er. i belong to a great crohns group...www.crohns-sanity.org. the people in there are special to me...yo can ask questions there and get help. i take pentasa, imuran, and i also take metamucil because it helps with my cocstipation or dirrehea problems. hope this helped some...just ask and i will help all i can.

    jennie
  11. ume

    ume New Member

    Hi Jennie,

    I am so sorry to hear that you have this awful disease, too.

    Thanks for the thought that it is 'diet by trial and error'. All the books on this (or at least the ones I have that cover IBS as well as Crohn's) make you feel as though you should do great on a certain diet. Though I understand there are some foods that everyone would most likely do well to stay away from, your point of people doing well on different things makes a lot of sense to me.

    Also, the info on the Crohn's support group is great. I will pass that on to my friend.

    You and Michelle have been so generous with your knowledge. I will talk with my friend tonight, hopefully, and if she has any questions for you, I will ask you both.

    Thanks, and my thoughts are with you. It does sound like such a difficult illness to manage. Good luck with it all!

    Ume
  12. libra55

    libra55 New Member

    Thank you for posting that website. I'll go check it out.

    I never ate much of that stuff you mentioned, like the red meat or the popcorn, because years ago I had my gallbladder out so I have to be careful anyhow; now with the Crohn's I will be more restricted.

    Michelle