In my case bloating is caused by compressing on the strictures, gas builds up on either side of the strictures, the intestines begin to spasm. I take Bentyl (for years I used Donnatal) and it relaxes...
Many of you know my story:Crohns for 46 years. Had 3 surgeries that have taken half my colon and about 10 feet of intestines. The surgeries DID take care of the problem, at that time. But these are...
12 weeks - I will assume 3 loading dose and 1 maintenance dose = 4 doses ? I went through the same thing, I was told repeatedly that Entyvio is slow, be patient, wait until 5 doses. I had absolutely...
There was a post some time ago that someone heard that "Crohns burns itself out" as you get old. Don't you believe it for a moment There are some skin inflammations that do burn themselves out but...
Potassium gets depleted with the constant diarreah so it is essential that you supplement with food twice a day. The strongest is Potassium Chloride but it is very caustic to the stomach so you need...
I was diagnosed with Crohns in 1970, 46 years ago. Back then there was hardly any meds, the first few decades there was Azulfidine, Pentasa, Asacol, Prednisone. Here is my Crohns progression: Years...
The previous post is entirely correct. By the way the Prometheus people are very aggressive about their billing The test was billed at 2500 and they called me right away to see if I will pay 10%,...
For perianal pain I use Prax which contains pramoxine, order it over the counter through your pharmacist. By prescription your dr can order heavier strength lidocaine, the shelf products are rather...
I had partial obstructions over the last 15 years. In 2010 they got worse and worse, I was vomiting every other day and had constant pain. One day the obstruction became complete, ended up in the...
Before going further in bashing Entyvio I need to set the record straight: Entyvio has worked for 60% of patients, usually the milder forms of Crohns. When you waste close to a year of infusions and...
The UNITI-2 psoriasis Stelara dosages by injection at 80 mg were ineffective for Crohns, 4 times a year is not enough. They kept experimenting with different dosages and different frequencies. In the...
Back in 2006 I did not have perianal crohns, it has developed in the last 5 years. I had ileum and colon fistulas back in 1995, they were removed when I lost my descending colon to surgery back then....
The antibodies will stay on your system for 18 months, did not develop antibodies with Stelara, it just ended when the study ended in 2006. I did develop antibodies to Humira back in 2014. Had the...
Yes I participated on a Stelara clinical trial 9 years ago and it worked extremely well. Read this post: http://www.healingwell.com/community/default.aspx?f=17&m=3553082 I tried to get prescribed...
Kegels are meant to exercise the pelvic floor and vaginal wall. The way these exercises are done are to prepare for childbirth and better sex. Do a google on kegel exercises and you will get the...
Have had this problem for years, it has been officially diagnosed as inflammation of the rectum. You gradually lose control of your rectum contractions and sphincter. When the urge comes strong you...
Over the years I have experimented with several types of fiber, each time for about a week: Metamucil and psyllium based products are a the top Fiber Gummies (Chicory root) are good too Citrucel...
Had the prometheus test a month ago, had to get authorization from insurance co. They billed to insurance the balance of $2500 out of which I had to pay 10%, $250...
We had a thread on accidents with lots of tips: http://www.healingwell.com/community/default.aspx?f=17&m=3358621...
The ptich for this book exagerates a mysterious amino acid deficiency that if taken in the right quantity will cure Crohns. The pitch confuses amino acids and healthy bacteria and the mistaken belief...
I was on Humira for 4 years, it stopped working in year 3. Then I was put on Entyvio and everyone kept saying that you must wait until at least 5 infusions until you see any effects. Welll I went to...
Having Crohns means that at some point you may get strictures I have lived with strictures for decades, here are some problems that may require surgery: You feel increasingly bloated, sharp pains and...
I feel your pain... You may try Prax which contains Pramoxine a numbing agent. I also use Calmoseptine which is avalable on Amazon. By the way there are many other products with creative brand names...
I have a long history with Potassium. Many years ago was recovering from my bowel resection and they found that my potassium levels were so low that I was at the brink of a heart attack. The doctor...
Humira worked for me for three years, it stopped working and the dose was increased to once a week. It did not work at all. Then spent 9 months on Entyvio (may be a choice for you) and it did not...
I have this problem for many years. In my case it is because of strictures that trap the gas until I become really distended. After eating and the digestive process begins the stricture loosens as...
I was on Entyvio for 9 months and did nothing for me. The GI office that I go to has 15 Entyvio patients, 10 it worked for them, 5 like me did not work at all. I was part of the Stelara clinical...
Went to the colo-rectal surgeon today due to my ongoing anal fissure.It appeared after 3 years of perianal crohns, it is about 1/4 inch long and it is not infected. I have been reading extensively on...
See my post on the visit to the IBD center in LA, one of the top in the country. http://www.crohnsforum.com/showthread.php?p=907707#post907707 I saw Dr Melmed which is the director. several months...
Had 7 infusions, no results, coming off Entyvio. Give it a maximum of 5 to see SOME improvements, if none I suggest you go to something else. See my other thread on Combo Therapy, it is under Stelara...
Wanted to report on my visit to the Cedars Sinai IBD research center in Los Angeles. After having failed Humira and Entyvio my GI was looking for consultative advice from the Crohn researchers as to...
Took Donnatal for many years. In 2013 the GI switched me to Bentyl which has worked better than Donnatal. Now it is the only antispasmodic that I use....
This is why I find this board so useful: Never heard of Lactoferrin until now, read the articles and find this very useful, thank you. My doctors only know how to prescribe medicine, they do not...
I have been eating sushi for many years and will say that most of it is raw. Cooked: Egg - Tamago, Eel(Unagi), Shrimp(Ebi). Tempura which is battered is cooked and some people include it in the Sushi...
So sorry, hit the wrong reply button. This was a reply to Eating Homemade Sushi, I will post the reply there....
38, you have the second half of life ahead of you... The Doctor prescribed Alendronate (variation of Fosamax) which slows down the disease but does not stop it. These pills are only once a week, some...
As you know I have Crohns for 45 years. During this time I have learned a lot (many times from this Forum) about medications and diet related advice. I have kept up with B12 shots, folic acid, Fish...
An update on what I use: After each bowel movement I use Cottonelle wet wipes, they are very gentle on the tissues For a stronger wipe I also use Tucks but they contains Witch Hazel which may...
Was on Humira for 4 years, the first 2 years i was on remission then developed antibodies and it stopped working. Have been on Entyvio since March: 5 infusions with little progress. They keep saying...
The pain may be coming for a obstruction that is building up, this will be the case if it is constant day and night. If the pain comes for an hour and then goes away you may be having severe...
If you take Potassium the best is Potassium Chloride, the smaller over the counter pills, take also Magnesium which helps absorb the Potassium. Other Potassium variations are also OK but not as...
I would be very, very careful if I were you. I got a pre-authorization letter sent BY THE HOSPITAL in behalf of the insurance company for 8 infusions. I had my first infusion and they billed me...
Try the patient assistance program at 800-830-9159. Your GI head nurse should also be aware on upcoming Entyvio approvals. As far as myself I had 5 Entyvio infusions and in the last 2 I began to see...
Finished my fourth Entivio infusion. Have seen improvements: have a bowel obstruction where I was feeling obstructed every day, now it has been a month without it. Also have a bad case of Perianal...
The itchy anus can come from several causes: 1) Constant diarreah that irritates the area which may be always moist. The cottonelle wipes is perfect to keep it dry. 2) Hemorroids which are easily...
I was on Humira and I wanted to get the shingles shot. DON'T, the shot contains live culture, you can get the shingles because Humira lowers your immune system....
I had this problem for years: The inflammation leads to irritation which leads to itching and pain. 1) You need to use a gentle wipe like Cottonelle to clean off the debris. Do not use Tucks which...
I will be 67 soon and had crohns for 45 years, I have not seen a slow down in symptoms. As a matter of fact Humira stopped working and my symptoms have increased in the last 3 years. There is logic...
For the itching I use Prax lotion, it works wonders. Its on the counter, don't need a prescription but must be specially order. Will not stop inflammation, it does reduce itching a pain....