hi, im new here please HELP!

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DD003
Regular Member


Date Joined Aug 2009
Total Posts : 29
   Posted 8/13/2009 2:47 PM (GMT -7)   
 
     Hi,
          I'm new to this support group. Actually this is the first time I have ever joined a support group for crohn's disease.  I have a whole bunch of symptoms I don't really understand.  And, I was wondering if it was normal what I'm going through. So, if you have any advice, solutions, or if you have felt the same please respond, it would be greatly appreciated.
 
SYMPTOMS:
 
gas pains
sharts - (sh** /fart)
unable to hold bowel movements
weight gain (especially after a flare up)
No defication of fat, just A LOT of BLOOD and mucus
inconsistant bowel movements... including texture/ times per day/ and the blood ( color variations and thickness in clots , but always a large amount of blood loss)
different types of pain from nausea, to sharp stabbing pain
acid reflux
anemic sypmtoms
sensitive to heat
Random hot spots on body
core is always hot
muscle pain
food tastes weird. (for ex: Fruit tastes insanely bitter or sweet)
fatigue
 
* the cycle is pretty much ... sharp pain- bathroom-bloating pain- burning pain- eat- sharp pain again- bathroom.
 
Also, these sympotms are in corollation with allergies that I have but no one can find.
I'm throwing false positives and negatives on tests. But whenever I get a flare up my allergy symptoms are worse. To the point I can't go outside cause my skin hurts so bad. It's scarey cause I went into anapholaxus shock three times and no one knows why. But, its when the bleeding was really bad.
 
I'm on asacol 400mg two tablets three times a day, 10mg of prednisone three times in the morning, 20mg omeprazole once a day, and ferrosquels once a day.
 
I was passing full pills of asacol each bowel movement the doc said its normal but I would like a second opinion.
And, I would love to hear of a good nutritionist. Bewteen these symptoms I don't know what to eat.
For example:Something might be great for my anemia or acid burning feeling but terrible for my bowels. And, vice versa.
I'm a vegetarian and dairy is hard for me to intake after away. I always had a  problem with texture in food.
 
If you know any info that can help. Books, doctors, nutritionist in the bklyn, NY area . PLEASE HELP!
 
I'm so lost I don't even know if there is an underlying illness cause the crohn's. I'm definately interested in a second opinion.
 

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/13/2009 4:40 PM (GMT -7)   
Welcome to Healingwell. My name is Chris. I think you'll find a lot of information for you here and a lot of caring support.

I know that I used to pass full pills of the asacol when I still had my colon...

For me when I flare I just try to stay away from harsher dairies, such as milk and ice cream, usually some cheeses are ok for me. I also eat lots of broiled chicken, mashed patato's, scrambled eggs, pretty much no vegatables because their harder to pass.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 8/13/2009 5:04 PM (GMT -7)   
Welcome to Healing Well, DD003! I'm glad that decided to join us. Crohn's disease can occur more often in people with some other diseases but there has been no illness identified as the underlying cause of Crohn's. [Caveat: Some of our members believe that Crohn's will be proven to be caused by MAP (Mycobacterium avium subspecies paratuberculosis), a bacterium.] Many of the symptoms you listed are ones that someone here has experienced. Because the intestinal tract is so long, and the fact that Crohn's can occur anywhere in the intestinal tract - symptoms vary widely among people.

Allergies are a form of autoimmune illness just like Crohn's. Having one antoimmune disease makes a person more prone to developing another AI disease. Do you have an allergist that is working on controlling your allergy problems?

Asacol capsules are structured to release the medication inside at a specific point in the intestinal tract. The capsules often appear intact in the stools when in fact they have released the medications. That said, some people do have rapid transit times that effect some medications.

If you are having trouble with acid reflux in spite of being on omeprazole, you should talk to your GI about trying a different medication for the GERD. Acid reflux can effect the taste buds which might be the reason for the odd taste of food.

Regarding a nutritionist - does your insurance provide coverage for you to consult with one? They should have a list of approved practitioners. I'm sure your family practice doc or GI would also be able to recommend a nutritionist. Not being a vegetarian, I doubt I can help much with your dietary question/concern.

Again, welcome aboard! ~~ Ides
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


DD003
Regular Member


Date Joined Aug 2009
Total Posts : 29
   Posted 8/13/2009 7:01 PM (GMT -7)   
Thanks for the warm welcome !!!!
I do have an allergist. I have to do some research with my health insurance. See, I'm only 20 and I've been having crohns/ colitis for two years so I'm still going to my pediatrician and pediatric specialists. I think I need a change of doctors.
Thanks again ! It's so comforting knowing there are people who have been there before and can help!! I might be new to these medications but symptoms I'm use to .. So if anyone needs to talk or vent I'm all ears. Thanks again !

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 8/13/2009 8:51 PM (GMT -7)   
Hey DD003 Welcome!
Sounds like you got alot of YUCK! going on!
I suffer from many allergy's too. Have had them since I was born. My kids reffer to me as "bubble child" I've always wondered if allergies and auto-immune have something in common. I react out in the sun, or go outside if someone mows the lawn. Some of these allergies are due to the med's your on. Not much you can do about it.
Gosh, if your insurance will pay for a nutritionist, Go for it! Don't be surprised if you don't get a good one. It took me 4 different ones to find one that knew anything about Crohns. It is true that many Crohnies have different food that works for them....Keep a journal at first it helps!
I am like "CrohnsPatient" eat lots of chicken, fish, mash potatoes, eggs, rice. Not a big red meat eater, milk or raw vegies and fruit. Absoultley no nuts, seeds or High fiber like bran or whole wheat bread. This is an example of a days food for me as a Crohnie,
Breakfast: 2 eggs, half white bagel Lunch: tuna or egg salad maybe saltine crackers. Soups in winter...homemade. Dinner: chicken breast, rice or potatoe occasionally cooked green beans....beans eventually are awesome way to get protein. Cooked beans...canned soft. Before I was diagnosed with Crohnes I only ate salads, nuts, raw vegies...if it was crunchy I ate it. Boy have things changed! Being a Vegetarian your probably not breaking things down correctly. Not to mention the pain of digesting.
Oh..maybe try a probiotic that might help you too. Look into them. Many Crohnies take it. They put good bacteria that has been stripped away back in to help you be able to break things down.
Anyway, you will get lots of imformation from reading this forum
Good luck to you...hang in there!
Flowery
 41 yr old woman with 12 surgerys under my belt. Diagnosed in 2005 CD. PTSD 1999. Gullbladder taken 2000, Hysterectomy 2005, Back surgery 1998 with herniation L-4, L-5, S-1. Two-Re-sections on small intestine, total of 18 inches taken out 2006. Stomach Herniation from re-section 2007, Been getting kidney stones too! The good news...finding this website.
                Meds: Imuran 200mg daily, asacol, Bentyl, Coelestid, occasional flagyl and cipro, high blood pressure meds, paxil 25 mg, 4/20meq's potassium, synthroid...& try to get alot of laughter in.
                         


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/13/2009 8:52 PM (GMT -7)   
HI! I took Asacol in the past and i never passed it whole in the stool ever..my doctor switched me to Pentasa..i think that works much better with little time release capsules. As far as foods to eat..it can be trial and error..try a food and see how it works out for you...for some reason for me carbs always felt so soothing to my stomach..so mashed potatoes, crackers, and then things like chicken soup and nibbling on carrots and celery..really helped me at times. Sounds like you have alot of symptoms...so its hard to say...what is caused by what...its a good idea to keep a journal of how you feel...and look into seeing a hemotologist to get some special type of bloodwork done..to see if you have antibodies in your blood or something going on in your blood that may contain a clue..as to the difficulty you have been experiencing...example..i have colitis, Crohn's, Lupus, Hyperthyroidism, Pleurisy...how much omeprazole do you take per day? I know my dad takes two pills per day..cause he has horrible reflux

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/14/2009 6:15 AM (GMT -7)   
Hi I just wanted to tell you I am one who takes Asacol too, and as Ides said it is very common to see the shell in the stool.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

DD003
Regular Member


Date Joined Aug 2009
Total Posts : 29
   Posted 8/14/2009 3:20 PM (GMT -7)   
thanks guys ! I'll start a journal. I'm taking it once a day for acid reflux. They did some tests with stool samples but not much . I'll double check, I have to call the doc next week. When it comes to the asacol I pass the substance inside as well. It's not a capsule it's just coated . But even though it sounds disgusting I disected the undigested pills ( it was gross) and it wasn't just the shells . Is that normal ? Should I be worried?


F.Y.I I just found out me + caffine = horrible stomach pain : (
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