A question for the Ulcerative Colitis Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

My doctor and I have tried different medications. At this time, I am on two different diabetes medications, Metformin and Januvia. Januvia will be temporary as I finish up another medication that caused my blood sugars to go extremely high. We have worked with doses and taken daily readings until I am within a range that they are satisfied and that my A1C is within a range that is healthy.

I’ve had several different medical treatments over the years, including Prednisone, and Asacol, and certain other steroids. And one of the most recent ones, Remicade, which was suppository and they all work to various levels. Nothing is ever like taking it away from me as far as medication. So it’s kind of just like a wait and see kind of approach at this time. I’m always looking for new things to try just to alleviate what’s been going on.

I currently receive ENTYVIO infusions every six weeks. I was on a bunch of medications prior to this, but in June of 2019 I started ENTYVIO. My GI and I decided that it was just going to be the best course of action because I was not responding to any of the previous treatments like steroids or any other medications like Mesalamine or anything. And I was still flaring really badly so in order to get me into remission, we decided to put me on ENTYVIO about 13 months ago.

So I had a colectomy and J-pouch, three step surgeries back in 2014. That’s the biggest way that I manage my colitis, but I still have a temporary end ileostomy right now. I still have about a centimeter and a half of rectal tissue left that likes to flare a lot. The best treatment for that really is CANASA suppositories, because it’s very localized inflammation and it’s very much distal. The best way to do that really would be either some sort of suppository or some sort of rectal foam or enema. The CANASA seems to work pretty well. It’s pretty comfortable. Obviously, if it got worse, I would probably go on some sort of localized steroid foam for it, but I’ve had a lot of issues with steroids, even localized, in the past. My doctor is pretty adamant about avoiding steroids with me at all costs, if possible. I have an ileostomy right now as part of my treatment because I had about a 12 inch volvulus and some scar tissue that went necrotic back in March, which is just another fun side effect, a ripple effect of having these surgeries, is scar tissue.

I’m currently taking Pentasa medication three times a day. I’ve been taking that on and off for years. Originally, the doctor I had been seeing, put me on that to manage my symptoms. And then I came off of it for a little while because my insurance wouldn’t pay for it. And then last year I went back on it because the doctor felt like it was the most appropriate medication. And it was mostly controlling my symptoms. It still is for the most part. I mean, when they spoke to me, my intestines seem fairly healthy. But right now I’m waiting to see the doctor again to discuss potentially changing to a different medication.

So when I was diagnosed at the age of 15, I was given medication. I was given mesalamine and Asacol. My mother also has the same condition, so she kind of helps me work with it. After a while, I felt like I was so young and I just didn’t want to take the medication, didn’t want to accept that this was part of my life. I actually discontinued taking the medication, and so for the past at least 10 years, I’ve kind of been managing this condition on my own by making personal life decisions, changes to my diet, and it has progressively gotten a little bit more out of control as I’ve gotten older. So things that I could get away with, for example, eating a certain type of food or drinking a certain type of, like lactose, now my stomach cannot even handle that a little bit, unfortunately, so I will be going back on medication after talking with my GI this coming year. After I give birth, I will be getting a colonoscopy and going back on medication, but for the past at least 10 years, I’ve just been managing it on my own and going through flare ups and just kind of taking it as it goes.

So my current medication is… Well, I guess my only medication right now is Inflectra. This medication I’ve only been on it for…I think since last August. So I came to my doctor, a lot of trial and error. I actually went to Inflectra specifically because my insurance no longer covered Remicade. So that’s what caused me to make that switch. Overall, any healthcare choice I make are combined effort between me and my doc.

So, I would probably say how I’m currently managing is taking an infusion medication as well as two other prescriptions that I take daily. And for the most part, it seems like they’re working. I’ve been in remission for about four years now. And the decision to, or I guess how we came to this approach was it was my doctor who really recommended it. They gave me the option and well, they gave me a whole host of options and this just happened to be one of them. And they said that this was not the most pleasant, but it was also going to be the most effective in his opinion. So, utilizing that and my own research, I think that’s how I came to this decision and came to the approach to using all of these medications.

Currently I am on Imuran’s generic, Azathioprine, and I just started Humira a week ago. The reason I started Humira is because the Azathioprine hasn’t been working as well and I’ve been in a flare for months now. So I needed to get back on Humira, which I was on before and then got off of, and the reason was is my colonoscopy came back and it was very severe. So I decided to go back on Humira because it did work at one point in my treatment, but I still have flare ups. So it did work so maybe I just need to be more in tune with my diet as well. But my doctor honestly really doesn’t help me with my diet and it’s different for everyone so that’s kind of tough.

Currently I’m taking Humira. I do biweekly 40 milligram injections. I’ve been doing that since March of 2018, and that was ultimately decided upon when I was having my third hospital admission for UC specifically. Before then, I had been taking a regimen of prednisone and mesalamine and that just really wasn’t cutting it, and so we decided to go for a biologic, and that was really … I mean, ultimately the decision was left up to my parents and I about which biologic to go with, and we chose Humira because unlike an infusion, you don’t have to be in a doctor’s office to do it or you don’t have to go to an infusion center. You can do it from home, and it’s I think one of the more convenient biologics. It was honestly a pretty logical progression from going from mesalamine and prednisone to Humira, and it was the most effective, so that’s why I stuck with it this time.

Well right now I’m on an infusion medication called Entyvio and then I also try to eat in a way that is easy for my system and I’m a vegetarian, I abstain from dairy and sugar and gluten and the Entyvio has helped a lot. I’ve tried other medications and they worked for a little time and didn’t. I tried going completely natural for a while and it worked for a while and then it didn’t. It does kind of seem to kind of be a moving target in that way. Right now the Entyvio has been working and I’m barely having any symptoms at all. It seems that the diet has been working. I’m barely having any symptoms at all and of course stress management is important. I’m a daily meditator, yoga practitioner, movement is a really powerful way for me to alleviate stress and so that helps with managing the condition because stress can be a huge trigger for symptoms and flare. And we just do a lot of good communication. My husband’s really sympathetic and I try to teach my daughter so they understand if I don’t have the energy to do something, or if I’m in a lot of pain, we kind of support each other.

So I’m currently using medical marijuana. My doctor doesn’t agree with it. He actually went back on his word and said, “Well, maybe you never had ulcerative colitis.” Because on my last colonoscopy, it was completely clean and I was feeling okay at the time, but now my symptoms have come back. So I really don’t use my doctor too much. Unfortunately, with my insurance, he is the only one in a 50-mile radius, and I just can’t afford to pay for it out of pocket or drive more than 50 miles to see my doctor, so I kind of just use the internet now as my own research, since my doctor seems a little bit less than helpful. The doctor that I’m seeing, he tends to write me off, even though I was hospitalized two years ago for three days and things like that. So I kind of take my own approach at this time and manage the symptoms as they come up. So gas well, unfortunately, nothing works for the gas, but I kind of burp and do a lot of that. And I hope one day I have good insurance and I can speak to a doctor that will listen to me.

Right now, I manage my ulcerative colitis with diet, exercise. I also have a therapist that I work with to manage my stress and anxiety levels. Medically, I treat it with a prescription of Entvyio, an infusion every eight weeks. We came about this approach about seven years ago when I was really sick with my ulcerative colitis and we needed to find a treatment in order to prevent surgery. I had a friend who had been successful with her Crohn’s management on Remicade and so I talked to my doctor about that and after discussing that treatment, we decided to move forward. And I was on Remicade for five and a half years but suffered a series of infections that they felt was somewhat related to Remicade and so we looked into Entyvio since it specifically focuses on the GI track and made the switch in December of 2018. It was really through conversation with not only my GI but also an infectious disease doctor to figure out how to try and best manage my ulcerative colitis without seeing an increase in infections throughout my body non-related to my GI track.

I manage my ulcerative colitis with medication. I take balsalazide three times a day, I also take low dose naltrexone, as well as several different supplements to help support a healthy digestive system. I have Rowasa enemas for when symptoms start to flare. My doctor and I have decided on these treatments based on what was working best for me and we have talked about the possibility of biologics if I continue to flare often. I also follow a diet that’s specifically for inflammatory bowel disease, although that hasn’t been working as well for me lately so I’m trying to play around with dietary things to see what I can eat and what helps with my symptoms the most.

Currently I am in remission for about a year-and-a-half. I started taking Entyvio, which is an infusion treatment, about a year-and-a-half ago. Me and my doctor discussed this pretty thoroughly. I was on Remicade before that, and it stopped working as well. The Entyvio has actually made me feel almost 90% better. I do have the stomach cramps every now and then, but they’re not really that bad. So I would say things that has helped me has been the Entyvio, the infusion that I’m currently on. And me and my doctor did go over the side effects and everything before I started it.

The way I manage my ulcerative colitis is through a surgical approach. I received my j-pouch within these past couple of years, and I am currently on no medications. At first, I was treating my condition with medications ranging from steroids to Asacol, to Remicade, to Entyvio, to Methotrexate. But these medications were no longer working for me. Not that I developed antibodies, but they were just ineffective. So now I do not take any medications because I went through, with the advice of my gastroenterologist and surgeon, to have my colon removed. And I had the internal reservoir known as my j-pouch created. And we decided on this approach because all medications stopped working, including Prograf, which was my last treatment option. And in order to save my life, and improve the quality of my life drastically, we decided to go ahead and have these surgeries completed.