• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Search results

  1. Ali29

    Mast Cell Activation Disorder - Diagnosis Finally

    Well it has been awhile since I have talked on the forum. I have just been totally exhausted with being sick with no quality of life to speak of. After pushing my GI - she sent me to an Immunologist - I really like her. After a lot of blood tests and 3 -24HR Urine Collection. I'm happy to...
  2. Ali29

    Enteragam Usage -

    Hi all! It's been awhile since I last posted, just so defeated with the Docs. I just completed a 1 week trial on Enteragam. This is basically a new medication and not covered by my insurance - however the Manufacturer has a $49/mo charge for the medication. Enteragam is a Serum Derived...
  3. Ali29

    Speciality Hospital

    Since I have not gotten any better, they have put a diagnosis on some of my issues, my GI suggested I go to a speciality hospital. Does anyone have any recommendations for hospitals or doctors with experience with odd issues? You can PM me if you would like. I would greatly appreciate any...
  4. Ali29

    Psycho Therapy for Those with a Chronic Illness

    My GI has suggested that I talk to a Psycho Therapist. She believes (and I feel that way many times) that when you are Chronically ill, that you start to feel the illness defines me. And in all honesty, when you have to work your eating around Dr. Appts, drug store, etc. because you are afraid...
  5. Ali29

    Crohn's Food Allergies Help

    My daughter was recently diagnosed with Crohn's and severe food allergies to: Peanuts, Wheat, Soy, Walnuts, Corn Can anyone recommend a breakfast or protein bar without these items? If they are Gluten Free they usually have soy or nuts. We are having a terrible time finding things she can...
  6. Ali29

    Median Arcuate Ligament Syndrome (MALS)

    My new GI thinks I have MALS. I had the first of the tests today. I have researched this extensively and although I'm not a doctor - I think she is right. Sounds pretty scary but looks fixable via surgery. Does anyone have any experience with this condition? :ywow:
  7. Ali29

    From possible SMA to Gallbladder Removal to Possibl Sphincer of Oddi Dysfunction

    From possible SMA to Gallbladder Removal to Possible Sphincter of Oddi Dysfunction Needless to say this year has been a tremendous challenge - 2 tests showed I have SMA, the last test showed I don't have it but I have a lot of charastics of this disease (Superior Mesenteric Syndrome). Then I...
  8. Ali29

    Superior Mesenteric Artery Syndrome

    So my pain doctor & GI have sent me to a General Surgeon because they think there may be scar tissue. I had a lot of scar tissue after a hysterectomy and hemmorage which my GYN had to go back in and clean up about 15 yrs ago. The GS thinks it may be SMA Syndrome and will have upper & lower GI...
  9. Ali29

    Prednisone & Blood Tinged Mucus or Tissue

    Has anyone ever experienced what looks like blood drops in mucus or what might be pieces of tissue? I've been on Prednisone since April - trying a taper just beginning this week. I have noticed mucus a couple of times during the last 2 weeks - prior to the taper but today there is bright red...
  10. Ali29

    Zenpep Enzymes

    I have been on Zenpep Enzymes for the last week. I have noticed increased nausea/pain - especially increased nausea which I have had a hard time trying to control (sometimes vomiting if I don't take the Phenergan quick enough). I have nausea meds but at 25mg Phenergan it still is making the...
  11. Ali29

    Prednisone and Teeth Hurting

    I have been reviewing the side effects and others who have had teeth issues while on Prednisone. My question is this - I have 5 teeth on one side that are hurting really bad since Saturday. The Dentist checked it out last month and said everything was fine (it was one tooth then). The level...
  12. Ali29

    Water Consumption and Dehydration

    I know that all the Docs say you should drink 8 - 8oz glasses of water each day. In November 2013, I starting seeing a naturopath and she said it was imperative for me to drink lots of water with the D I was having. Since then, I have been drinking 60-70 ounces of water every single day...
  13. Ali29

    Prednisone Question

    I've been on Prednisone since April, things improved pretty quick with the D - a couple of times a week which was a huge improvement, no side effects. About 2 weeks ago my GI decided to try a taper - immediately terrible D many times a day, weight dropping again. After a week of this - he put...
  14. Ali29

    Another Upper GI & Colonoscopy on Tuesday

    I just don't understand why with all these meds I'm on, I'm still living with D several days a week, nausea & pain everyday. Apparently, I have one of those cases that don't meet all the text book requirements and there may be more than just the UC & Crohn's going on. GI says I'm not currently...
  15. Ali29

    Bile Acid Malabsorption

    Does anyone know what can or causes Bile Acid Malabsorption when you still have your gallbladder? My GI cannot determine the cause yet - I've tried many meds - we are at a loss? Constant nausea, lots of pain - eating will always cause nausea/pain within an hour of eating? Lots of D even with...
  16. Ali29

    Advice Please

    Hi, I am needing some advice. So far the Pentasa has only made a 50% difference in the D (3-4 good days a week) so the GI is adding Lotronex. He is also running more blood tests. I'm frustrated as the nausea is still here so I'm on Phenergan 1-2 times a day - sometimes the nausea starts...
  17. Ali29

    New to the Forum - Scared

    Hi, I've been reading the forum and have obtained a lot of information - this is a wonderful site and has helped me make a long list of questions for my GI. I've had a colonoscopy, upper GI, and GI Pill Cam which finally gave me the final diagnosis. I have been in a flare up since 4/2013 -...