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Ulcerative Colitis
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Posted 12/31/2014 11:13 PM (GMT 0)
I was diagnosed with ulcerative colitis at the age of ten and have pancolitis. The UC always shows up as chronic with biopsies and I have moderate to severe inflammation. I have had ulcerative colitis for ten years and am now going on 11 at the age of 21. I tired Remicade with Imuran and saw remission, but eventually both didn't work and then I would take Prednisone. I switched to Humira after the Remicade failed and the Humira never really worked. I'm currently on 40mg of Prednisone and weekly Humira (GI doctor ramped it up even though it doesn't work when I give it every other week). I am taking some time off from college to do the surgery. I take Prednisone every time I have flare ups to control what other drugs cannot. I have gone to the hospital before for IV steroids and then flared later. I'm scared to discuss surgery with a surgeon I found, but worry about all of the drugs after taking them for ten years and seeing little improvement. I'm thinking about the two stage j-pouch surgery, but still need to talk with the surgeon soon. Any experiences with the surgery would be great or suggestions/comments.
Posted 12/31/2014 11:24 PM (GMT 0)
I am happy to have gone through with the surgeries. My takedown surgery is in February. You're prednisone usage will dictate whether you can do the surgeries in 2 or 3 steps. I was constantly on 40 mg a day and would get bad everytime I tapered down. Therefore, I had to do the surgeries in 3 steps. Please make sure you have a colorectal surgeon and a facility that has plenty of experience in this area. I was flaring terribly at the holidays last year and this year I feel great. I have a life again and am able to enjoy things. Check out the ostomies forum for a lot more good advice.
Posted 12/31/2014 11:33 PM (GMT 0)
My GI doctor recommend Graham Sellers and he has 23 years of experience. I would most likely end up having the surgery in his Denver, CO office. I made the decision to have surgery very recently and still do not have an appointment with the surgeon. I have an appointment with my GI doctor to discuss the colonoscopy results since I had one a few days ago, etc.! I'm happy to hear that you're doing well and happy. I want my life back and to stop worrying about finishing college with all of the flares I have.
Posted 12/31/2014 11:34 PM (GMT 0)
Plus the drugs make me feel terrible during school and I'm always tired
Posted 1/1/2015 12:19 AM (GMT 0)
I am rushing out now, and cannot respond appropriately, but you are not alone. My daughter fought a similar fight. Look through the posts from me if you are interested in our journey. Surgery is already better than life with UC when it gets too bad. Certainly nothing to rush into. Keep investigation both surgeons and their support staffs. Do not settle. A three step with your history of steroid use will probably be suggested.
Have you tried Entyvio?
More tomorrow.Happy New Year!
Posted 1/1/2015 12:57 AM (GMT 0)
I have not tried vedolizumab and I have discussed other options like Cimzia and other drugs, but I wonder is it worth it to continue on with more drugs? The side effects of the drugs now and later scare me after ten years. Remicade, Imuran, and Humira did not put me in to remission for long and then I have to do Prednisone. I would taper off of Prednisone because I can't take 8th for too long and then Humira doesn't work now. Will the next drug help? I keep moving forward with so many unknowns about whether or not the drugs will work. All three do not work any longer. I just feel like I keep switching and then the UC flares back up after some symptom relief. 40mg of Prednisone and weekly Humira will definitely take a toll and the side effects are already appearing.
Posted 1/1/2015 1:54 AM (GMT 0)
Did you go straight to biologics or have you ever tried the lessor drugs? Just curios.
Posted 1/1/2015 1:59 AM (GMT 0)
I'm allergic to the aspirin based UC drugs unfortunately otherwise I would have. They brought up some and then I told them about my aspirin allergy.
Posted 1/1/2015 2:14 AM (GMT 0)
I don't know if those drugs would help with the severity of my ulcerative colitis though.
Posted 1/1/2015 1:14 PM (GMT 0)
Entvyio (vedo) is a newer biologic you can try. Different method of action than the other biologics, if you want to keep fighting.

Do your research first. If you are considering surgery then schedule a consultation with a surgeon who does jpouches in your area. It isn't, by any means, a commitment to get surgery. Rather it is a question and answer period where you learn about the process in greater depth. Often, surgeons require a colonoscopy before doing the procedure and the next step maybe to schedule one, should you continue down that path. Read some blogs of people who have gone through the process, e.g., ronnielee-fightingforit.blogspot.com/2012/10/surgery.html?m=1. Ask questions on the healingwell ostomies forum. It's not a light undertaking, and you should educate yourself best you can before undergoing it. Surgery isn't a cure or panacea, it does carry risks, and you're never 100 percent pre-uc afterwards. But for many that have failed the medication treatments it is a huge improvement. Generally, 95 percent of patients are happy with their surgery and afterwards many wish they had done it sooner. Is it time, only you'll know. Good luck,
Posted 1/1/2015 2:39 PM (GMT 0)
I had a colonoscopy a few days ago and I will see up a consultation appointment with a surgeon soon. I have an appointment with my GI doctor too. I have watched videos of the surgery/post operation and looked at quite a few well known websites. I know there are complications and will discuss those with the surgeon.
Posted 1/1/2015 2:43 PM (GMT 0)
I had two stage j pouch surgery four years ago. I had severe pan colitis and none of the drugs could touch it. So I didn't have much of choice. SO HAPPY with my j pouch. It's given me my life back literally. It's a tough process to get thru but worth it in the end. If you have any specific questions I would be happy to try and help.
Posted 1/1/2015 2:58 PM (GMT 0)
What other drugs did you try and did you see any kind of improvement? I saw that you said none of the drugs would touch it. I've had remission for a while and then the drugs failed (10 going on 11 years of drugs not working). How difficult was post op./did you have any major complications? I know of plenty of other drugs to take, but I wonder will those quit working? I would think that surgery would come back in to question again later on after more years of drugs.
Posted 1/1/2015 3:12 PM (GMT 0)
I started with the usual...asocol, pentasa, lialda, rectal meds, prednisone, ect. Moved on to 6mp, remicade and even did a hospital stay to have Cyclosoprine administered. All failed. I had a small (very small) improvement with Remicade but not enough to stay on it. The only one I didnt bother with was Humira. I was too sick at that point to carry on with drugs that didn't work.

I had one complication after step one surgery. An abscess/infection. Although not fun, I would not call it major. It was resolved pretty quickly. I recouped quickly after step two (reversal). Start to finish the whole process took me four months to feel normal again.
Posted 1/1/2015 3:17 PM (GMT 0)
I think you are very young and if you were a family member I would beg you to try every avenue before surgery. Now I don't suffer like you do and I don't know you, but that is my honest gut (pun) instinct. Once you do it it is a done deal that can't be undone and it comes w it's it's own drama.

I know it sux! Try some. Of the other stuff first. If you go to a surgeon, he will def try to talk you into it, that's what he does.

Keep reading here, give yourself another year (or at least some time), try diet, suppllements, meditation, etc.

I guess I just want to be the voice for no surgery for now.
Best!
Posted 1/1/2015 3:20 PM (GMT 0)
I tried asocol too and the foam enemas (both gave limited improvement). I take Prednisone every time I flare and I'm on 40mg now with weekly Humira (doctor ramped it up after the Humira failed to work at every other week). I feel gross on Prednisone and the side effects are not fun. I was hospitalized senior year of high school for a week and a half on IV steroids (noticed symptoms once I came back home to finish school). In college I missed a week because I was so sick and needed Prednisone, etc.! All of these drugs/flares affect me in school and I love school/want to do my best, but I feel really tired and always have issues with flares during school.
Posted 1/1/2015 3:21 PM (GMT 0)
You wonder if the other drugs will quit working that you haven't tried, why don't you wonder if they will work instead? Ok, that was my 2 cents! Good luck.
Posted 1/1/2015 3:22 PM (GMT 0)
I tried VSL#3 and diets as well along side of the other drugs.
Posted 1/1/2015 3:28 PM (GMT 0)
I know, I completey understand. You just want it over! But look how young you are. You might find something that works. If it's not too hard on you and if you can figure out another plan of action, try it.

I hate pred too! I have moon face ( a little) from the enemas. Has your dr tried Euceris instead of pred? It doesn't have the side effects as pred.

What about 6mp? Go get a list of every drug type avail and scratch off what you have tried and the combos and see what's left! There might be something worth trying. Some people get 10 year remissions from biologics. You are lucky you can try it, I can't take them because of other illness.

Whatever you decide, go slow and thoughtful.
Posted 1/1/2015 3:33 PM (GMT 0)
If not Asocol then I don't remember the name of it
Posted 1/1/2015 3:36 PM (GMT 0)
It sounds like you have tried a lot already. You are a strong person, and pretty dam smart too! You got this, whatever you choose!
Posted 1/1/2015 3:40 PM (GMT 0)
I think that I tried Euceris. I remember something by that name and then they put me on Prednisone due to it not working. I don't think Asocol was correct. My bad! I do want other drugs to work, but it's very difficult to test the waters in college and miss classes due to flares. I weighed 89 lbs with my last flare and I almost didn't finish my second semester of sophomore year. My GI didn't want to switch away from Humira because he was worried about the next drugs working even though Humira started to fail.
Posted 1/1/2015 3:58 PM (GMT 0)
My family has a history of Crohn's disease, but all three GI doctors that I have had over the years always diagnose me with pancolitis. My grandma had megacolon with Crohn's disease and tried to take a great deal of drugs to fix it. My father was diagnosed with Crohn's too. Also, my family does not have a history of colon cancer, but my mom had a very rare form of cancer and the risks of these drugs scare me especially since my family has had many different cancers. I would think that increases my risk. I think I tried another drug too, but I do not know the exact name as of now.
Posted 1/1/2015 4:02 PM (GMT 0)
Has anyone had the surgery?
Posted 1/1/2015 4:09 PM (GMT 0)
My grandma did due to her megacolon and she had emergency surgery. Crohn's is tricky since the surgeries usually do not fix the problem. Her Crohn's came back after that surgery. A friend of mine has Crohn's and had many surgeries and is pretty sick most of the time (he is almost 23).
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