Oh good ole' Prednisone. Weaning can be quite tricky, especially if you've been on it for a while and our adrenal glands are on vacation...not to mention that you can start to flare as you try to...
a month or so ago. I was moved back to Remicade every 8 weeks, and I definitely couldnt it make it last time...at about[b] week 6 I was more than needing it. So I had my last treatment on April...
Well I was just curious how long everyone has been on Remicade, and how well it has worked for them. I have been on it for over 3 years and it has worked pretty good. Yes I did have to have surgery...
Oh man I just did my appeal about 2 months ago since I was denied...the reasons being because I can sit, stand and stoop for adequate periods of time, and interact with others. I dont know what that...
Yes I have taken Colestipol, which is the same as Colestid...and to be quite honest I hated it with a passion because it tasted horrific...yuck. I took it because a foot of my terminal ileum,...
O lordy I had the same surgery in December, but I had my gallbladder out when I was six...so kinda the same. For me the diarriah lasted for a few months until it finally subsided and got less intese...
Hey I also take remicade and get the glorious benadryl and pre-steroid injection. It is generally solumedrol or solucortef...and it isnt bad at all, it just helps prevent allergic reactions. Doesnt...
lots of viruses/bacteria from my hereditary spherocytosis (spleen killed my red blood cells really early), then after my spleen was removed still continued to have infections just not as many and my...
Well other than crohns I have allergies, asthma, hereditary spherocytosis (hemolytic anemia), iron deficient anemia, anxiety, ovarian cysts, polyarthralgia, exzema, migraines, gallbladder and spleen...
I'm not having a blood transfusion...just an iron Infusion...definitelty different. Normal hemaglobin for men is higher than 12-14, and about 12-16 for women. The docs are more worried about the...
I'm doing it because it takes a long time for me to make good red blood cells because i have spherocytosis aka my rbc's are little and die easily. The main reason is because my ferritin is sooo...
Hello all! Well my doc called me today, and said that I needed an iron infusion because my hemaglobin is still at 9.6, and my ferritin is 3....normal is 15-150 so needless to say I am LOW. Has anyone...
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I'm sorry to hear that your baby is sick. There are cases of babies getting Inflammatory Bowel Disease, but of course it is rare. I'm wondering if the food at night is bothering his stomach since he...
Hey all! Well I got a call from my docs nurse practitioner and she was worried about my blood counts because my hematocrit was 29.6 and my hemoglobin was 10.2. She had me get more blood work done the...
[color=blue>Alrighty] [b][color=blue>My] [b][color=blue>I] [b][color=blue>I] [b][color=blue>If] but if it does kick in (which it will...I know it) I will probably get a port since I am such a hard...
Although mine could have been laproscopic I chose to have an open surgery because it has been around longer, and their seems to be less complications afterwards. I have known some people that have...
Hey all! Well I have been having quite a bit abdominal pain today, and earlier today I was cramping and had diarriah. The pain is sharp and came on quite suddenly. It is in my upper and lower...
Ok so I have a high pain tolerance, and do not mind needles or IV's by any means, but mother of pearl this is getting old. I have literally had hundreds of needle sticks since September, and the...
I freakin love my dad...he is glorious! Definitely didn't cause my crohn's...that is such a weird and rediculous explanation....
Alrighty so my GI called me today, and said that she thinks I have crohns in my small intestine pretty much where the endoscopy and colonoscopy cannot reach. So she said I need to have a upper GI to...
My GI NP called today, and said that her and my GI think that the crohn's is where the scopes cannot reach. They are afraid that it is hiding in my small bowel so I am having an upper gi done and...
Alrighty so I had my scopes today, and they went well...fell right asleep and actually woke up nauseous so that was annoying, but I am feeling a bit better. Now the doc said he didn't see anything...
Well I decided to do the Miralax/Dulcolax prep because I just hate golytly, and couldnt bring myself to do it. So I took the dulcolax at 1:00, and I start the Miralax at 4:00....I had diarriah even...
Holy mother of pearl...my GI prescribed me Colestid to help bind the bile in my body since I dont have a gallbladder or ileocecal valve. However this stuff is pretty much as bad as golytly, and I...
Ok yeah I think I am going to get the miralax since it is over the counter, but I can't remember how much I need to mix with the 64 ounces of gatorade. If anyone knows please post ASAP...I have to do...
Hey all...well I have a colonoscopy and endoscopy on Tuesday, and of course I was prescribed golytly for my prep. I haven't had this in 5 years because my GI's have since used other preps for my...
Hey I am sorry to hear about your daughters diagnosis. I work at a camp for chronically ill kids in the summer, and two of our sessions are for crohns and ulcerative colitis. I have had many kids...
Alright this may seem different, but I have been experiencing more weight gain then weight loss the past few years no matter how sick or flared up I get. Not that I am too suprised because I was on...
Oh indeed I also deal with Anxiety associated with my Crohn's Disease. Frankly how can we not be anxious...worrying about getting sick, flaring, medications, losing control, not making it to a...
I dont have an autoimmune disease, but I have a couple other diseases. I have hereditary Spherocytosis, which is a hemolytic anemia that you are born with, GERD, Ovarian Cysts, Some arthritis deal or...
Hmm...well I have never heard of a triple dose, but I have done a double dose in the past. I once had two remicades within 4 weeks of eachother and it didnt kill me...so I am thinkin that your...
Yes drink water to hydrate yourself, and also keep heat on the arm right on the vein before you have it put in and that generally helps push the babies up. I have the same problem and it is a pain....
Well luckily my parents still pay for everything...praise the lord because I would literally be living under a bridge. (not to freak you out) I have had 4 hospital stays between Sept. 28th and...
Definitely go and see your doctor. Have CBC done, so you are able to see what your hematocrit and hemaglobin are. I felt like that when I was SUPER anemic, and it literally made me tired to eat food...
What was even funnier was my mom and I both cracking up, and crying hysterically trying to explain the whole story to my older sister at lunch right after the apt. We could barely make it through...I...
[b] to share was so embaressing at the time...it makes me double over laughing thinking about it now. [color=#0000ff>So][b] having my goods checked out by a stranger. So my surgeon enters the room,...
Haha I love all of your replies. Apparently we all want greasy food, popcorn, pasta, chocolate, and pretty much just what everyone else gets to enjoy whenever the heck they want. Even though I cant...
I know this is a random question, but I just thought I would throw it out there because people ask me this all the time. It cracks me up when people find out that I have Crohn's (if they know what it...
Welcome back from one glorious resection I am sure. I had mine about 6 weeks so I know how you feel! All I can say is seriously take it easy and even if you feel better don't push it. Meaning lay...
Hmm..well first off I am sorry that you had an obstruction those babies HURT! Well when I had mine I was sent to the ER because I was doubling over in pain, but I ended up being admitted so they...
Alrighty to tell you the truth the child wont take the phosphosoda because it is disgusting. For one of my colonoscopies my GI had me drink a ginormous about of Miralax mixed with 64 ounces of...
Hey all! I was able to get into my GP today and she is convinced that it is still a Crohn's thing, but instead of my terminal ileum, which they just took out she thinks it could be higher...
Here are some websites that I found regarding patient or medication assistance: http://www.patientmedicationassistance.com/ http://www.rxassist.org/ http://www.makoa.org/freemedicine.htm Although I...
Oh goodness I am so sorry to hear that you are having a difficult time with your crohns. Alright here is the deal...you may not qualify for medicare, but you should be able to qualify for disability...
6 weeks ago removing a foot of my ileum, appendix, a bit of cecum and my ileocecal valve. I am aware that it takes a while to start feeling better, but holy moses this is getting rediculous. After...
I saw my GI today because I have been having a lot of issues lately. She looked at my tummy and felt around and found a nice lump in my upper right abdomen. I felt it yesterday and it just felt like...
I have had many blood tests done but I will ask about my B-12....
Thanks for all the glorious advice. Very helpful. I am not sure if I would get one just wanting to know about the option becasue all of these IV pokes are getting pathetic....
http://en.wikipedia.org/wiki/Port-a-Cath Any advice would be awesome, and if anyone has actually had this done please explain how it was, and whether or not you are happy with it and how the...