Update on Crohn's condition,meds,doctor problems!

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Jan 10, 2006.

  1. MamaDove

    MamaDove New Member

    I am now 3 weeks since my colonoscopy which revealed severe chronic colitis but gastro deemed it necessary to refer to and treat as Crohn's...

    I began the prednisone and Cipro and as of today still swollen, moreso with any activity esp. snow shoveling and vacuumming...No diarrhea, BUT blood in stool at times, nothing like it was so overall I am improving...

    I saw him last week and of course, he was hurried, what doc isn't? He exclaimed two things that had me concerned "You are asking way too many questions, I have had a bad day" and "I'm a control freak"...Shoulda ran out then, but I always give the benefit of the doubt when others are venting so I let it go...

    He sent me home and wanted me to try Azathioprine (an immune suppressant that can cause lymphoma, as per the NIH site) I reluctantly agreed!

    Got the script the next day, kept on the pred in the am and added the azathioprine in the pm...If I tell you I was shaking as I took it thinking this has the potential of doing much damage here...WHY WOULD I DO THIS TO MYSELF?

    I took it two days and then felt like I was dying inside, aside from all my other symptoms, now my immune system is shutting down from these drugs...I couldn't justify taking another dose and after a weekend of looking into anti-biotic therapy for the condition, I decided I would rather risk the effects from long term antibiotics, then the alternatives this doc has given me...BTW, I mentioned mycobacterial infections and therapies for such and he didn't know anything about it, so he said...

    Monday morning came and I decided to write some concerns down, brave a snowstorm and drop the note off at his office...It read:

    Azathioprine-discontinued due to research and side effects "I feel like I'm dying"

    Prednisone-would like to wean off

    Lab Work-please order tests for pancreas, adrenal glands and liver...Never tested adrenal function since I have been going to him, if the adrenals aren't producing hydrocortisone, my immune system is compromised right? If my illnesses are auto-immune, this is a problem right?

    Antibiotic therapy-minocycline, doxycycline long term

    Enemas or suppositories-willing to try

    Anti-anxiety-something for anxiety is needed for me to get through this ordeal, the stress is overwhelming and can't be good for my condition...Melatonin ok, or Valium would you prescribe?

    Okay, so those were my questions, I thought were quite appropriate...

    His nurse called today and she relayed a message for him..."You should really find a doctor for a second opinion, don't get me wrong he will continue to see you, but this is his choice of treatment and you choose not to adhere to it, therefore he can't go any further"...

    I just said "HMMMMMMMM"...Things that make you go HMMMMMMM!

    Of course I had some things to say, but was very respectful and did not use the words I would have liked to but did when I hung up the phone...

    So for now, I sit and ponder my next move in trying to save myself from getting worse...Imagine a doc that wouldn't consider antibiotics treatment and wait for stool testing but so wants to admit me for remicade IV and steroid therapies til I do die...I have told him several times when asked how I feel..."I feel like I am dying"...No other way to say it!

    Oh goodness, what do I do...I feel like I am missing something, if I let go and take what he prescribes and I get sicker I will never forgive myself for not trusting my GUT...

    Why do we have to suffer with all of this only to suffer some more...The everyday struggle doesn't let up and yet we have to endure these dd's along with people opinions, doctors egos and families that don't care to understand, as well as financial hardships only to be told, you should find a doctor who can help you...UUUGGGGHHHHHHH!!!!!!

    Sorry, this got away from me and became longer than I thought it was going to be...

    I hope someone is having a better day than I, certainly some are worse out there, so I am not complaining, but as usual looking for answers that we should be able to get from all the so-called specialists we pay...

    Darn, if I could punch a wall or stomp my feet without hurting more, now would be a good time...

    Thanks for reading through this, if you did...Nite,nite~Alicia


    DOC JUST CALLED...WANTS TO SEE ME THIS MORNING TO ADDRESS MY CONCERNS AND WRAP THIS UP...His nurse says that I shouldn't be nervous, he's not angry with me...Imagine? Like I care how HE feels...This is like playing baby games! TAG, he's it! tehe...I will post later what he tells me...I am hoping for a good outcome but expecting another waste of my time so either way I won't be surprised...
    [This Message was Edited on 01/11/2006]
  2. kaiasmom

    kaiasmom New Member

    I am so sorry you have been going through such turmoil. I have also had such issues with doctor egos and it is all so frustrating. As if we don't have enough problems!!!

    I would definitely seek out another doctor. If he is unwilling to work with you, I don't think he really cares wether you get better or not. If he did, he would be willing to try new things. I just think he would never admit that there is something out there that could help, other than what he has told you.

    I hope you are able to find a compassionate doctor that will work with you, and actually try to help you get better. That is what you, and everyone else here, needs!! If we could only be so lucky.

    Take care,
    Leanne
  3. Jen102

    Jen102 New Member

    might you be willing to google glutathione and crohn's disease? I am taking glutathione by iv for CFS, FMS, etc. and it has helped me so much--is miraculous for me. It seems they think there are some genetic variations which may cause CFS--and that the same or similar variations may cause chron's. you could try oral glutathione without a prescription. google wellness pharmacy and glutathione. there are many more articles there as well--not sure if they include crohn's articles. blessings to you. you sound like you feel miserable and like you don't have a lot of confidence in your docs or treatments. i am sorry for your circumstances. Jen102
  4. MamaDove

    MamaDove New Member

    Just came from my gastro, after he told me via his nurse to get a second opinion, he called me again to see me today...

    He came in with a sour puss and didn't even say HELLO...I just sat there and waited for him to make his move...

    He says that this is his protocol and my request for AB therapy is just not realistic...

    He also had papers with him, from the web, which were studies done in the US on MAP bacteria...Of course, the study showed that ONLY 11 of 24 of the studied with Crohn's showed MAP BUT I was impressed that he took the time and looked into it like he said he would...I responded that he needed to look past the US studies at others and I offered to get that info for him, HE IS TRULY INTERESTED!

    We discussed the Azathioprine being a cancer causing agent and I could not take it and be comfortable...He finally agreed that my concern was legitimate...

    I brought the printout by GABE MIRKIN (WHY I PRESCRIBE ANTIBIOTICS)...he actually started to read the highlighted areas...His comments were: "I don't agree", "I have never done this", "We have chosen steroid therapy and never AB therapy",...

    I then tried to reason with him that if in fact this is a bacteria or infection, prednisone will not solve the problem. Being I have auto-immune diseases, I agreed the pred may be beneficial, although a possible danger, I agreed to stay on it for now and will wean off as soon as he sees 3 days, no blood, pus or mucous...

    He then focused in on Gabe Mirkin's AB therapy in which there was something I missed, well didn't miss it, just fogged out and read it wrong...

    He looked at it again and said "If he has treated successfully and we don't know about it, how can we have learned to do the same to help our patients?"...I realized I was getting thru to him...

    When all was said and done, I received my scripts for flagyl and cipro along with lab tests for c reactive protein, cbc for anemia, pancreas and liver enzymes...EXACTLY WHAT I WANTED!!! Along with having my old doc back, without the ego and the argumentative nature I had last week...I thanked him for listening and caring enough to look at the bacteria aspect of it, hoping this will be the beginning of the answer for me as well as telling him that he may have 100 patients that are a certain way and listen to everything he says BUT that I was different...I was special enough for him to take his time, open his mind and figure out what is happening to us...

    I reminded him of my other problems...FMS,CF to name two...I said I know there is an overlap in conditions, for me one has led into another, just like many others...And I also know, I am missing something!!! I need his help to solve this...I also told him that I may be the one to unleash the info that causes someone else not to suffer with this...And he could be the doc that starts the miracle to help millions of people...I said before I left "Maybe that's why we're here"..."You may be out of a job in the future, but I assure you it will be worth it"...He said "I'll give it a go, Good Luck to you"...

    I am encouraged by all of this...By not giving up, nor giving in, I feel like I have begun the right course to get me well...The past 4 months have looked dismal along with the past several weeks looking like I was going into the hospital for all kinds of IV treatments...I think I've turned the corner now and my fingers and toes are crossed that it keeps going this way...

    I know these posts of mine are long, and believe me they are quite shortened, we all know we could write books about our experiences...But you also know, that when we post, we feel strongly about the issue enough to put ourselves in more pain, sitting, typing and straining our brains (esp. fogged like I am now)...I am thankful for all of you and I can't wait to be among the winners at the finish line when we are celebrating a cure in the future...

    Peaceful days ahead~Alicia
  5. Shelly413

    Shelly413 New Member

    Hi... I too have been where you have been on your battle with the doctors when it has come to my journey of Crohn's disease. I was diagnosed when I was 17. I am 31 now. I have been on multiple medications. I ended up having a small bowel resection due to medicines not working for me and my problems becoming worse. I will tell you I gained a great deal of information and support from Crhon's Colitis Foundation of America. CCFA.org There are many people that are just not comfortable opening up in person about the illness/disease and given time you will see this and you may want to look into a support group offline as well online. It seems as you did your research well and I admire how you stood up to your doctor. I truly have all my hopes and prayers that this outcome is good for you. I'm sure as you are well aware of with Cronic Illness sometimes it takes changing things around if something does not work out and this does happen with many ppl with Crohn's and the illness can be unpredictable which is in my opininon why getting connected with other people in the same situation is vital to you as being newly diagnosed. I applaud you for not just accepting that one medication or the other! I do hope for you a good outcome but do hope for and encourage you as someone who has been there to not just research on your own but talk to people with the illness over the phone or meet up in a setting if possible in your area. Best of Luck and healing~
    [This Message was Edited on 01/16/2006]