FM and Crohn's disease?

Discussion in 'Fibromyalgia Main Forum' started by legalwoman, Mar 19, 2006.

  1. legalwoman

    legalwoman New Member

    I have been away from the board for a few months, due to computer problems as well as new health problems. I was recently diagnosed with Crohn's disease and had surgery 5 weeks ago to remove damaged intestine. It appears I have had this disease for quite a while and didn't know it. If the FM wasn't enough, now I have this to deal with.

    I am coping, and am back to work. My FM is not as bad right now, maybe because I am focusing more on the Crohn's and not the FM. I worry about all the meds I am on now and what they may be doing to me long term. But right now, the goal is to get my Crohn's under control and hopefully get me into remission.

    Does anyone else have both Crohn's and FM? If so, how do you deal with it? I am still reeling from all this, and not sure what to do. Any advice would be appreciated.

    [This Message was Edited on 03/19/2006]
    [This Message was Edited on 03/21/2006]
  2. findmind

    findmind New Member

    I'm sure everyone will be so glad you are back after such a terrible ordeal. I have a friend with Crohns and she does really well if she follows all the treatment protocol really close.

    She has to make sure she eats regularly and correctly for her, or she has terrible pain and loss of treatment control.

    I hope you will get better and better now that you have a diagnosis and can find ways to help yourself along with all the medical treatment.

    Could you have a bird? My partner says her little bird was the best company she ever had...including me!
  3. alaska3355

    alaska3355 New Member

    I believe he had a similar issue with Crohn's and healed himself with diet and probiotics. He has also written "The Maker's Diet".

    You are brave...working with FM and Crohn's. How do you do it all? Terri
  4. Pianowoman

    Pianowoman New Member

    I'm really sorry about the Chrohn's. That makes life a lot more difficult. I'm impressed that you are back at work; that shows your strength. Hang in there and let us know how you are doing.

  5. kch64

    kch64 New Member

    I don't know if we've "met" yet. Hi, I'm Kendra.

    Hope you continue to feel better.

  6. legalwoman

    legalwoman New Member

  7. findmind

    findmind New Member

    BUMP for more input for legalwoman.
  8. JLH

    JLH New Member

    So glad that you are able now to join us again!

    I hate to hear about your recent diagnosis and surgery.

    I don't know anything about Crohn's, just wanted to welcome you back. I'm glad that your fibro is flaring up right now!

    Big hugs,
  9. JLH

    JLH New Member

    Viagra off-label uses.........

    The anti-impotence drug Viagra could be of help in treating the inflammatory bowel disorder Crohn's disease, researchers have said.

    Scientists found evidence that Crohn's is triggered by a weak immune system response.

    The discovery challenges the previous view of many experts that the condition is an autoimmune disease, caused when cells are attacked by the body's own immune system.

    Investigators looked at the numbers of white blood cells produced by patients with Crohn's disease in response to the surgical removal of intestinal tissue or abrasion of the skin.

    They found that Crohn's patients generated much lower quantities of white blood cells - part of the immune system - than healthy individuals.

    To test the inflammatory response to bacteria, the researchers also injected a harmless form of E coli under the skin of patients. In healthy controls, blood flow in the area of inflammation increased roughly 10-fold over 24 hours.

    But Crohn's patients had much lower blood flow. The scientists found that the abnormally low blood flow could be corrected by treating them with Viagra - indicating a possible role for the drug in treating the disease.

    Reduced or delayed recruitment of white blood cells to sites where bacteria penetrate might lead to persistence of the bugs in the tissue, say the researchers.

    The body may respond to this build up of bacteria by secreting inflammatory molecules which accumulate and lead to the development of chronic inflammation typical of Crohn's.

    Professor Anthony Segal, of University College London, who led the research, reported in The Lancet medical journal: "Our investigations identified defective innate immunity in Crohn's disease ... In Crohn's disease, a weak immune response predisposes to accumulation of intestinal contents that breach the mucosal barrier of the bowel wall, resulting in granuloma formation (irritated tissue) and chronic inflammation."


  10. PVLady

    PVLady New Member

    I am sorry to hear you have been through so much. I don't have Crohns,but my best friend does and she also had surgery.

    I will ask my friend how she copes with her illness and post again.

    Hope you feel better soon...
  11. legalwoman

    legalwoman New Member

    Am I the lone person on this board who has both FM and Crohn's? I don't mind being unique, but under these circumstances, it doesn't thrill me a lot. Perhaps I should change the title of my post.

    I heard about the Viagra research. My best friend (male) got a real belly laugh out of that one when I told him.

    [This Message was Edited on 03/21/2006]
  12. jenemc

    jenemc New Member

    I have both. I was dx'd with crohns first and then a few yrs later with FM. I am sorry you have both. What kind of meds are you on? Where is your crohns located at in your intestines? Have they put you on prednisone to help get your inflammation under control? I am also a member of aa great support group for ppl with crohns..the name is crohn's sanity..the ppl there are the best. Let me know if I can be of any help.

  13. HagerTX

    HagerTX New Member

    I have something similar to Crohn's, but every endoscopy I have done reveals something different. My first endoscopy in 1998 (after being symptomatic for several months) showed an abnormal biopsy. They treated it like a non-specific IBD. Prednisone then Asacol (5-ASA). Later discovered food allergies, which seem to mostly control my symptoms. Either way, the majority of the docs feel like I've got autoimmune problems driving the stomach symptoms.

    Anyway, sorry to hear that you've got Crohn's. I hope the surgery did the trick.
  14. MamaDove

    MamaDove New Member

    I had FMS I think beginning in 1993, then Ulcerative colitis came in 1995, I believe after large doses of Motrin...

    After being on Asacol on and off (not a fan of pharma, so I discontinue use when I feel like it) I had no 'flares for years but always my intestines felt unhealthy ESPECIALLY while on Asacol...

    In August 2005 I began bleeding again, but this time was different, it was taking the life out of me...After 4 months of trying everything, I schedualed a colonoscopy...December 23rd my doc said it looked like Crohn's now and demanded prednisone and cipro at first, then a remicade infusion after that didn't work too well...

    I did some more research and found an immunologist in DC who treats ALL Crohn's with antibiotics ONLY...I brought the doc's protocol to my doc and he reluctantly gave me the scripts for Flagyl and Cipro 500mg...After some more research, I decided that the Flagyl was too dangerous but the Cipro was hopefully going to help me...I was still on the pred 40 mg and started the 500 Cipro...Within 6 days, no more bleeding at all!!!

    There is an underlying cause to these IBD's and I for one would like to know whether it is wheat gluten, map bacteria, mycoplasmas, etc...My doc is not interested in looking into the cause JUST treating the so-called disease...

    I have been off all meds for two weeks now and no bleeding or trouble with bm's...Remember, I was sick enough to warrant being hospitalized and given IV's and now with an antibiotic I am cured...Granted, I haven't had breads, ice cream, much milk, etc... for several weeks and I am sure that has played a part too...I know that bad food = bad health and I try to adhere to a healthy diet...

    MY FMS has been worse since this ordeal began but I could chalk that up to the cold weather in Maine...It's hard to say for sure what helps and what hurts at any given time with these dd's so I just go with the flow...

    There are a few here with Crohn's who have to deal with this monster too...I know how you feel aside from the surgery you had to undergo...I am sorry you had to go through that, it must have been difficult...I hope that the surgery rid you of the disease enough that the meds will now do their job and help you to remission...

    We think FMS is hard enough to live with each and every day but when you add a diseased colon to it, among other rotten illnesses, it can be unbearable at times...

    I am sure others will come along with their stories or you can search the board for previous posts, I have been a part of several recently...We are doing our best and certainly others that share our problems on here are a great help...

    I wish you peaceful days ahead and the support you need to get over this hurdle...All the best~Alicia

    PS. just checked your profile and saw you had PCOS...I had endo in 1993 and surgery to remove a 4 pound mass and my left ovary and tube...Some say the surgery disrupted the colon or the endo attaches to it and causes these issues...Just thought I would mention it, it may be something to look into in your case...I also forgot to mention the supplements that some told me about that have really seemed to help...L-Glutamine,Alfalfa and Probiotics to name a few...
    [This Message was Edited on 03/21/2006]
    [This Message was Edited on 03/21/2006]
  15. libra55

    libra55 New Member

    I was diagnosed with Crohn's Disease in September of 2005, after a particularly severe "intestinal flu". I spent five days in the hospital. My sed rate was over 100 when I was admitted. I had an acute attack of uveitis (autoimmune eye disease which I have had for a long time anyway), my mouth was full of sores, my joints ached, and I was covered with lesions which I learned are called erythema nodosum. I also ran a fever and was totally dehydrated. I nearly died.

    Looking back over the last five years, I can see a pattern of these symptoms developing, except for the inflammatory bowel problem, which was the last symptom to develop. The GI doctor told me that often happens, even though Crohn's is technically an inflammatory bowel disease, it is autoimmune and multi-faceted, affecting other organs and symptoms. Interestingly, these symptoms began right around the time of my FM diagnosis, in 2000.

    I had a wonderful GI doctor. He saved my life. I just saw him today for a follow up appointment as a matter of fact. I will be having a surveillance colonoscopy in May but I'm doing very well. You will do well, too.

    In the hospital I was given IV fluids, potassium, magnesium, and 4 different antibiotics. I also had intravenous SoluMedrol, which is a steroid. I left the hospital on 60mg a day of oral prednisone which is a very high dose. It is now March and I am now on no steroid at all. It took me all that time to taper down. The doctors did it very slowly. The reason you have to taper is to give your adrenal glands time to wake up and start to produce cortisol again (which they will not do if you are on artificial steroids). Cortisol is our body's own natural steroid. You cannot just stop steroids cold turkey.

    Some "Crohnies" as we call ourselves cannot get off the steroids, and those are called steroid dependent. Personally I feel better on steroids, but they have side effects.

    I am on a medicine called mercaptopurine, or 6-MP as it is known. This is an immune suppressor. I take it twice a day. I have had good luck with it. I also take folic acid, iron, and vitamins. Crohnies have a malapsorption problem; we don't digest our food well. Make sure you eat plenty of protein. We need 30 percent more protein than other people.

    MamaDove who I talk to frequently on here also mentioned Asacol, which I may or may not be going on based on my upcoming colonoscopy.

    I also have to have frequent blood work, to monitor the medications, and my iron levels, as I bled for years and was not aware of it. Some people will have a massive bleed; I never did but I had little tiny bleeds going on for years which never showed up visibly.

    I just bought a book by Fred Saibil, MD called "Crohn's Disease and Ulcerative Colitis: Everything You Need to Know". It's pretty informative.

    I also have hemorrhoids and "Crohn's tags" (ugly skin tags around the rectum), both drive me crazy. It's part of the condition. I also have fistulas which are outgrowth of the intestine, I have one which wraps around my umbilical, you can just see it through my skin.

    There isn't any cure for Crohn's but it can be managed. I agree it is a monster. I wish we could have a Crohn's board here. We all need one another for support. I'm sorry you have this. I still cry some days too. It's a lot to deal with.

    You will have good days and not so good days. Go slow, eat a healthful diet, make sure you drink a lot of water, take your medicines, keep your doctors appointments, read everything you can get your hands on about this disease, talk to people, rest when you need to, have a sense of humor, put YOURSELF first (I had to learn the hard way to do this for myself), trust in a Higher Power, never ever give up. You will get through this.

    [This Message was Edited on 03/21/2006]
    [This Message was Edited on 03/21/2006]
    [This Message was Edited on 03/21/2006]
  16. legalwoman

    legalwoman New Member

    Changing the title of my post did the trick. I knew there had to be more "Crohnies" on this board.

    My doctor has me on Asacol and Imuran. I want to avoid steroids because of the side effects. I am having constant diarrhea now, probably because my terminal ileum and part of my right colon were removed. The terminal ileum plays a part in absorbing bile salts, and with it gone, I am suffering what is called bile salt diarrhea. I am going to talk to my GI at my next appointment, as I understand there is a med to help with the diarrhea.

    This is a new diagnosis for me, so I worry about what my future holds. I am also on a message board for Crohn's disease. The people there are really wonderful and supportive. The range of experiences there are mind boggling, from only mild Crohn's symptoms to one person who only has about 3 feet of intestine left. After having one surgery, I don't want to have any more.

    Thank you all for your responses. Dealing with both FM and Crohn's is going to be difficult, but I have a positive attitude and will do whatever I need to do.

  17. libra55

    libra55 New Member

    anybody else have Crohn's and want to share?

  18. Thistledown

    Thistledown New Member

    to the point where he had his entire colon removed, and now he has severe arthritis and FM. I had irritable bowel for years before I was diagnosed with FM. I wonder if chronic malabsorption syndromes aggravate/trigger FM?
  19. SherrieTeacup

    SherrieTeacup New Member

    I am sorry for what you are going thru besides FM. My question is do you get sores in your mouth? The doctors think my granddaughter has chron'She gets like ulcers in her mouth.
  20. jenemc

    jenemc New Member

    Sherrie I get mouth sores b4 i go into flare most of the dr told me to take L-Lysine..its in the vitamins section. ask your dr and/or pharmacy about it.


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