I had a mass that was discovered during my bowel resection. Doc went in laproscopically only to find an inflammatory mass the size of a grape fruit/small canteloupe. Surgery was converted to a full...
Violette Rose, unfortunately nothing I have done gives me much relief from the sacroilitis. I did twelve weeks of physical therapy, I've had two sets of steroid injections into my SI joints to no...
I have sacroilitis related to crohn's disease. I am mostly fine during the day other than some achiness in my lower back and hips. At night, I can lie down for about three hours and then I'm in the...
I sure hope so. Unfortunately, I have yet to eat healthy. It seems lettuce and the other veggies that I long to eat do not like me. I was "bad" yesterday and had a delicious salad for lunch. I...
If you had to rate the very worst symptom of having crohn's disease, what would it be? Example: diarrhea, abdominal pain, joint pain, urgency, fatigue For me, I would say urgency. That uh oh moment...
Just wondering how many of you have this and what symtoms it gives you?...
I too have SI Joint issues, sacroilitis is what my Rheumy diagnosed after xrays of my pelvis. She said it is another extra-intestinal manifestation of crohn's. She suggested Remicade, but due to my...
I'm sorry you are hurting. But, I can say you are not alone in how you feel mentally. I know it's good to have a positive outlook on life, but sometimes when you are dealing with a chronic disease...
Kazbern: what problems do you have with sacroilitis? What do you do for it?...
Lu: my pain is pretty much only at night when laying down. After about 3hrs in bed, I am in excrutiating pain that wraps all the way around my pelvis. The only relief comes when I get up out of bed...
Lu: just wondering if you have any other autoimmune diseases? What treatment are you doing for the sacroiliitis? Pain management? I have this too, was told it goes along with the crohn's disease....
Yes, unfortunatley I am proof that it can come back quickly. I had my resection in january 08, by july I was having side pains again. I had a scope done that November and it showed that it was back...
Ides it's funny, i can't lay down. I feel much better when I am upright. It takes almost two hours in the mornings before I am moving somewhat normally. I have Crohn's disease so GI and Rheumy say it...
Those of you who have sacroilitis, what do you do to ease the pain? I can maybe lay down in bed for four hours before I am hurting so bad that I have to get up and go sleep in the recliner. I have...
That's just it, most of the statistics are based on higher doses of imuran for transplant pts. vs those used in Crohn's disease. I've been pondering this for a couple of years, and my doctor has been...
I've been very hesistant to take Imuran due to skin cancer, I had malignant melanoma in my early 20s. I've also had basal cell and squamous cell. Mind you, i was a sun worshiper for my teen years,...
Ivy which kind of carcinoma?...
I know that some of you have been taking Imuran or 6mp for many years. I'm wondering what is the rate of skin cancer for dosing related to Crohn's. I know that a lot of studies are targeted at the...
Could be sacroilitis, that will cause low back pain that radiates to the front. Feels like a deep intense burning pain....
Stripey: so you have not had any skin cancer issues or hair loss?...
What side effects have you had? Just curious.......
Thank you for the replies.......
For those of you taking Imuran, how many of you experienced hair loss? How long did it last? How much, are we talking a few extra hairs or go buy a wig? Thank you!!...
Anyone??...
So my prometheus testing came back as "intermediate metabolizer" for imuran. Anyone else fall into that category, if so what is your dose of imuran?...
I was told on Imuran that it would be every three months after the initial very frequent testing...
Are there any side effects of the high dose Vit D that you take for several weeks before the maintanence?...
For those of you taking Imuran, has hair loss been an issue? If it is, how much hair are you loosing? I'm about to start taking imuran and I guess I'm just scared about the side effects. Being a...
Is this crohn's related or something else?...
I had open abdomen bowel resection and was in the hospital for six days. Luckily I had no complications and it was fairly straight forward. My pain was well controlled with the Morphine PCA for the...
For those with Sacroiliac Joint pain, what do you take/or do for it? I am miserable!! I finally went to a Rheumatologist and they did a pelvic xray and I'm waiting to go back this week for the...
Ides, is your pain worse at night when you lay down in bed? I find that I can't lay in my bed for more than three hours without becoming miserable. I end up sleeping in my reclining chair most nights...
Do any of you have this condition? How do you treat it? How was it diagnosed and by what kind of doctor? Thank you all!!...
I did the same thing for several weeks. I have no idea why it happened....
Ok...another questions, so for those of you who go >4 times per day, would you say you are flaring or is this just normal for you?...
I'm a Registered Nurse in a large urban hospital. I work Labor, Delivery and High Risk Pregnancy. I luckily have FMLA and use it if I'm sick. I work 12 hr shifts often with no break, so it certainly...
Just wondering what is an average number of bowel movements that you experience on a typical day?...
Luckily, I've only had one obstruction and that is what led to my diagnosis of Crohn's Disease. I described the pain just like being in labor for childbirth. It was intense, rythmic pain. Actually,...
Roni I've been eating 'bad' foods for the last week and I am really starting to have abdominal pain today. I've been trying to munch on raw veggies because I've been getting so hungry in the late...
When was your last resection Roni?...
I was recently diagnosed with PCOS and Insulin Resistance. I have gained 50 pounds in the last two years, since having my bowel resection. I eat three meals per day and snack only occasionally. I go...
Wondering if anyone follows a low carb diet and how does your disease handle it? I've been recently diagnosed with Insulin Resistance and have been watching my carbohydrate intake. It seems since I...
Anyone been diagnosed with insulin resistance? I'm thinking that due to increased carbohydrate intake in my diet I am now having issues with weight gain and increased fasting insuling levels. Any...
Kazbern, I could have written your response. I too have the arthritis in SI joint and to be honest, it causes me more problems than my bowel at this time. I talked with my GI doctor and she...
For those of you taking 5ASA's, how bad did your disease get before you moved onto something more powerful such as Imuran? Some days I don't feel that sick at all so I don't know if it's worth moving...
For those of you who take an antidepressant, which one do you take? Side effects? I have come to realize that I can't handle dealing with this darn disease without some extra help. It has really...
Sweetnakira: I am not currently on Entocort, I weaned off in May. I am currently just on the pentasa but will probably start Imuran in August when I go back to the GI doctor....
Do you have urgency with your BMs? Like one minute you are fine and the next you have to go NOW? Also, I'm having trouble finishing a meal before I feel the urge to go. It would be nice to make it...
Do you guys ever have formed poo after a bowel resection? I had a right hemicolectomy in '08 and have had diarrhea ever since. Some days it might be slightly mushy but for the most part it's pretty...
What do you do to relieve the pain?...