I just had a proctocolectomy in June 2019 after battling UC for 9 yrs. My UC was moderate but never in remission. I had the colectomy due to high grade dysplasia in my colon. My surgery was done...
I live in central Mass about 1 hr east of Amherst. I had UC for 9 years until this June when I had a proctocolectomy due to high grade dysplasia. My UC did not respond to most drugs; however it did...
I want to see if anyone has experience with taking high doses of VSL#3. I've been taking one sachet (450cfu) per day now for the past 3 years. It has helped with form in my stools. I've tried most of...
My biggest problem is constipation. Especially if I eat any gluten or high sugar foods. The constipation actually makes me go more because it takes several tries to evacuate the bowel. I take...
I just came off a 2 month course of Uceris. It helped me alot. It reduced my symptoms down to 4-6 formed BM's per day. Too bad its not a maint drug....
I got shingles 3 1/2 years ago and then got diagnosed with UC 6 mos later. My UC symptoms started while I was recovering from shingles. I had it on the right side of my face along the trigeminal...
Uceris helped me. I supposidly releases more on the left side. Also, you could try the mesalamine enemas's. You don't mention diet changes. For me, anything with sulfites and alcohol causes me to...
My regular Gastro takes 5, but I just saw a specialist in Boston at BWH and they take 30. He said its easy to miss something if you take so few....
I wanted to share some info on a recent change in my medication therapy. I've been taking mesalamine (Asacol, Canasa, enemas, Asacol HD, and then Apriso) since I was diagnosed with pancolitis three...
I have the same problem with weight gain. I'm 6' 1" and weigh 160lbs. A year ago I was at 180lbs and 2 years ago I was at 190lbs. I dropped to 180lbs after going gluten free. I've been battling some...
UcandMe - Yes I take the Apriso right after eating breakfast. I have fatigue but its due to anemia. My Hemaglobin and Hemtocrit have been low for the past 8 months. I take iron supplements but I...
I've been on it for the past 3 weeks. It stopped my bleeding and reduced my frequency a little. For me it's not like Prednisone, which makes all my symptoms disappear. I've had not side effects from...
I just started taking Apriso for my UC. I had been on Asacol for the past 3 yrs but didn't feel it was doing any good. I didn't have any side effects from the Asacol other than I think it was...
I have a question for those that have been on or tried the different versions of oral mesalamine. Did one work better or worse than others? I've been on the max dosage of Asacol (now Asacol HD) for 3...
I quit 6MP and Azathioprine cold turkey with no problems. Per my GI it clears your body within a week. Azathioprine caused me drug induced hepatitis. My liver #'s all went back to normal within 10...
For the past 18 months, I go 4-6 times/day but its mostly at night and early morning. I'm usually fine during the day. All are formed, rarely do I see any blood, rarely have accidents. Prior to...
I asked my GI about rectal meds and his initial response was the same as you got. Since I had pancolitis, he didn't feel it would do any good. But then I got a second opinion from a Dr at Harvard Med...
I took 6MP and also took Azathioprine. At 75 mg, 6MP made me sick (nausesa), complete loss of appetite, and had stomach cramps. I stopped it and all symptoms went away. I tried Azathioprine for...
I usually have 2-3 BM's within the first 2 hrs of waking. Its all way been that way for me. With colitis, I'm more focused on ensuring I get "cleaned out" before I head out....
Looking to see if others have experienced appetite and taste changes. I've had UC now for over 2 yrs. I've got it somewhat under control (3-6 formed BM's per day, low urgency, no blood). In the past...
It sure sucks having this disease. Interrupted sleep, cramps, shitting your pants, running to the bathroom, I could go on and on. But as bad some days may be, I know there are others who have it much...
The enamas work well for me...
When I was on Azathioprine, within a month, my ALT/AST went up a little higher than yours. My Dr had me checked for Hepatitis (negative) and had me stop the Azathioprine immediately once he got the...
I had a bone density test done last year. You lay down and they take some sort of images of your neck, back, hip (they don't measure everything). I had very mild osteopenia in my neck. I was on pred...
When I was diagnosed, the GI took biopsies at the ileum, distal/ascending, transverse, proximal (left side), ans rectum. Nothing in the sigmoid. But I have pancolitis, so it was everywhere....
V00DOO - I have a lot of days just like you're experiencing. I gave up long distance cycling cause of my UC. Usually play golf by myself in case I need to jump into the woods for a BM. And then...
A.B., sorry to hear about your troubles. This disease presents us with a major challenge and can cause a great deal of suffering. Not knowing what to expect, not knowing what will work, and lack of...
I try to avoid sulfites and high sulfur foods. Beer, wines, processed meats, red meat, balsamic vinegar, lemon juice, onions all cause me a problem (i.e. bleeding). I tend to do ok with broccoli and...
Azathioprine (Imuran) gets metabolized in the intestine to 6MP. From there, they are both the same. Taking 6MP is a more direct delivery vs Azathioprine. I've taken both. 6MP (at 75mg) gave me bad...
bearmama- 6mp and biologics failed me also. Rectal therapy, high dose probiotics (VSl#3), diet mods, and LDN helped get me to a manageable state. I went to a naturopath in Springfield, MA - New Leaf...
I take 4.8gr of Asacol daily along with a nightly 4gr enemas. I usually only put in half the enemas because its easier for me to retain. Have been doing this for the past year and it seems to keep...
I use generic mesalamine enemas instead of Rowasa, they're much less expensive. Many GI doctors get free samples of newer drugs like Lialda to give to patients to try. Also, see if your Dr would...
I take in when I travel or going to be in the car for more than a couple hours - no more than 4 in one day. It relaxes the colon and probably more of a mental security thing. I keep a bottle of the...
I started taking LDN about 2 1/2 months ago. I think it combined with diet mods (no lactose, no gluten, no sugar, no alcohol) helped reduce my symptoms. I have much less urgency and a very low...
I tried 6MP and it made me very sick. My liver tests were ok the first 2 months, but then I had bad very nausea, cramping, and total loss of appetite after the dosage was increased to 75mg. When I...
I tried SCD for about 3 weeks but lost too much weight (20 lbs) and didn't see any improvement. My Dr's said they saw better results in Crohns patients with SCD vs UC. Based on my symptoms and what I...
EqualsTwo - my insurance covers the VSl#3 DS but it's not much. 20 sachets cost me $100 after the insurance. I buy the regular sachets from Amazon and it's about $83 for 30 sachets. Its pricey stuff,...
Late to respond but I'll add my two cents. Agree with the others that the TMPT test is needed at the onset to see if you can properly metabolize the drug. My GI did it prior to me starting 6MP. One...
I would have liked to go but just found out about it from your post. I have been taking VSL#3 for 5 months now. Started with the capsules and now up to the sachets (one 450B in the morning and one...
For me, no early appts due needing to be near a bathroom in the am. Always carry extra clothing and wipes (even in the golf bag). Be mindful of my schedule and be near a bathroom when I know I'm due....
When I was taking 6MP, I first had the CBC and TPMT tests. Then after a month had the liver (ALT/AST tests). The liver tests were done monthly....
I started taking 1 capsule and saw no change. Upped it to 2 and then 3 per day. Started to see more form. Then I switched to the sachets, taking 1/day. Saw more improvement. I upped it to 2 sachets...
there's a heck of a lot of negatives (I really miss a good nights sleep), but there have been some positives that I'm experiencing - I'm paying a lot more attention to my health - I'm eating 1000...
ManhattanMama - I have pancolitis. When I was diagnosed, I was having 4-7 very loose movments/day with blood. It progressed to full out crimson red unstoppable diarrhea with cramping, really bad...
seasons21 - I was definitely an exception when it came to 6mp and azathioprine. My GI had people get the nausea but not the liver toxicity. My liver enzymes went back in the normal range within 5-7...
seasons21 - I started 6mp @ 50 mg. After 2 months I went up to 75 mg. I had all the metabolite testing, pancreas, and initial liver tests, which were ok. After 2 weeks @ 75mg , I had lots of nausea,...
I use Canasa (1000mg) sometimes and the mesalamne enemas nightly. When using a Canasa, I put a little lubricant on it. I feel a little pressure for the first 10-15 mins, but then don't feel a thing....
My GI wanted me on Remicade, but after some very bad drug reactions with 6mp, azathioprine, and Cimzia, I decided to double down and try every natural therapy I could. I've also been on Pred about 4...
The person who gave me my bone density test said 4 months is longer term. I had been on 3 separate 1 month Pred tapers (40 mg with 10 mg step down) over an 8 month period and then had to go on a 7...