I need your help :)

Yes, you need to be on stronger medications considering the fact that you have the desease for more than 25 yrs. It is not good have lingering desease around. Next line of therapy will be immune suppresants and if those does not work biologics. I too have this desease for more than 12 yrs and i am currently failed immune suppresants. Trying jak inhibitors as biologics are very expensive in my country.

Have you had a colonoscopy recently? You are definitely flaring and need something stronger. I really tried to do the tier 1 medicines but they never really helped me. I think you should be open to changing because they would most likely help you out of this flare. You may need a steroid if things are bad (a lot of pain and high amount of bowel movements) but maybe not.
My period definitely gives me more bowel symptoms. My GI said his ibd patients who are woman tend to have terrible periods. Mine is 10/10 debilitating. Can’t leave the house- just curled up in pain.

Hi, Joan! What do you mean about your scope being not that bad? If inflammation was seen at any level, that explains your symptoms and means you need to be addressing it with meds consistently. If you’re not using the lower level meds daily, that’s at least where I would start. How have your flares been addressed in the past? What recommendations did your doctor make when you had your scope? If you had inflammation with what you’re currently doing, they should have wanted to do something else.

I, too, have had overall mild disease. My first ever flare was kicked using a course of prednisone and I was put on Lialda (oral mesalamine) for maintenance. However, I didn’t stay on the Lialda and though I remained in remission, I flared again when I got pregnant 7 years later. I was able to have a pregnancy remission with Lialda, Canasa suppositories, and mesalamine enemas, though I only needed the rectal meds for a little while. about a month after delivery I flared again and we tried prednisone and Uceris in addition to those other meds. But it wasn’t getting under control that time and I went on Entyvio which has managed my disease for almost 7 years now.

If you’ve been having these kinds of symptoms for years, it’s certainly time to try some new things. It doesn’t necessarily mean you have to go right to immune suppressing therapies if you don’t want to or your doctor doesn’t think it’s necessary quite yet, but you do need to be proactive if you want to have hope of possibly avoiding that because the further you get behind the 8 ball the harder it will be to control without going to those kinds of meds. Let us know when they get back to you and what they say. I hope you’re able to get some relief soon!

I was terrified of going on a biologic. But I was so sick I felt I really had no choice. I’m sure it must be harder when you don’t feel like your disease is at an extreme level.

I remember wishing so hard for a “normal” life again. And now I am, so yes even though it’s scary, the higher tier medications can get you back to a normal life. It’s not always easy finding the right one — I got lucky with my first biologic and have been in remission for 7 years.

But uncontrolled inflammation is not good for your colon. Can you post the results of your colonoscopy and the path report?

Although medications and possible side effects sound scary, be aware of how small the percentages of those possible side effects really are. Most of us here on “higher” medications are happy to not be sick anymore and happy we made the decision to go on them and get our lives back. I for one have zero side effects or symptoms on entyvio.

By small colonoscopy do you mean a sigmoidoscopy? I’ve had a couple of these in the past and if you’ve had two colonoscopies within the past year, I personally wouldn’t do more than that. Would insurance even cover it? Also, did he not do biopsies with your first scope this past year? Because even if he didn’t see anything a biopsy could have shown inflammation that would have explained your symptoms. That’s what just happened to me…my scope looked good but biopsies showed patchy mild inflammation in my left colon. I honestly don’t know why he wants a 3rd scope in a year when your symptoms haven’t changed. Bloodwork and a fecal calprotectin, sure. But I personally would balk at a 3rd scope.

Yes, I am on Entyvio which is an infusion medication, though now they also have injections like Humira. I personally probably won’t change to injections because I don’t think they’ll work as well. I say I have mild disease but it has been classified as moderate in the past. I say mild because we’ve always been able to control it, I’ve never been hospitalized for it, etc. I went on Entyvio because we weren’t getting my last flare under control with the usual means and I had an infant at the time as well as older children I had to run to and fro, and I couldn’t be chained to my bathroom while we experimented. I remember one time being in Target with the baby and if I hadn’t had my older daughter with me, I would’ve had to take him in the bathroom with me while I had diarrhea. Another time, I was trying to nurse him and had to put him down to scream while I ran to the bathroom. I can’t recall now exactly how long we messed around with other things but it was several months. I didn’t want to go on stronger meds but I didn’t feel like I had a choice at the time and it has proven to be the right choice because even still it appears I still usually have some mild inflammation going on somewhere. Without it I would likely be a hot mess.

Entyvio is focused in the gut and has one of the best safety profiles. I have had no side effects. I am not tired more than normal. I will never try to convince anyone to do anything in regard to medication, but I will say that I do recommend Entyvio to anyone needing and wanting to try a biologic. I have lived a pretty normal life for the last 7 years because of it. My hope for you is that you can get it under control with the lowest/ least amount of meds possible. But it’s hard to know how things will go, so just try to be open to whatever is best for you, especially as a mom.

Momtoboys,

How bad was your inflammation? At this point I would not be willing to add something like Imuran in my current state (if it was suggested due to my microscopic inflammation) because overall I’m doing well. I would, however, be willing to try something like Colozal instead of the Lialda. I personally think the generic mesalamine may not work as well as name brand Lialda but my insurance changed their coverage last year from Lialda to the generic, so that’s what I’m on now. I don’t take birth control and won’t but have considered using a progesterone cream. I’m always a little wary of messing with my hormones because of how it can affect symptoms but at the same time I know I’m no longer dealing with my premenopausal self. I feel like there’s just this liiiitle hump I need to get over, so to me it’s more a matter of needing a mini tramp rather than a rocket ship, if that makes sense, lol!

Do you still deal with food triggers or can you eat what you want? I had a bout of D today which I think might have been from having a few slices of salami with cream cheese yesterday. Maybe? When that happens I always go through what I ate the day before to try to make connections but I’m not always sure. And then is it the UC? Or possible IBS? I feel like it’s a constant guessing game. If my doc were to think a med adjustment could get rid of that issue I could maybe go along with that.