1 1/2 years after dx and I still don't get it

I've lurked on the boards for a while, but this is my first post. Please forgive me if it turns into a novel.

Let me say first, I'm diabetic, as was my dad. The meds he took gave him diarrhea, which he was able to manage with daily Immodium. When I started having diarrhea, I thought it was because of my diabetic meds. I had an horrific episode of what my doctor dx as diverticulitis, but the antibiotics fixed it up. I didn't have insurance and couldn't get a scope, so she dx on symptoms.

I went for my first colonoscopy about 1 1/2 years ago. I didn't go because I was having problems, but as preventive since both of my parents had had polyps and wanted to be on the safe side. After it was over, while I was still coming out of sedation, the doc came in and told me I had UC. He showed me pics, told me to follow up in a few weeks, and was out the door. When I followed up a couple of weeks later, I was put on Apriso (mesalamine) by a NP in the practice and given a print out from the internet about UC and was scheduled for another follow up in 3 months. The meds worked for a few weeks, but then I started having problems again. I tried to get in to see the doctor, but was again put off on the same NP. Rather than trying another med, or adding on something, or even steroids, they wanted to do another scope. I refused. This cycle continued over the next nine or so months. I never saw my original doctor again, and finally got fed up with the practice. No one ever told me about the disease, what to avoid, what might help. None of them really seemed to care about anything but giving me another colonoscopy.


In January, I started seeing a different GI who is over an hour away from where I live, but so worth the drive. He listens to what I say, and he is willing to consider my thoughts on treatment. He started me on Humira, and steroids until the Humora started working. Being on the steroids was horrible, but eventually the Humira started working - at least better than the mesalamine. He also added Bentyl, which at first made a big difference. Unfortunately, the Humira stopped working so well, and over the last six months, I've ended up in the ER with anemia and dehydration twice. Dr decided to change me over to azathioprin, and I started it about 10 days ago. about a week before I started it, I started having more problems, and as of today, I'm afraid I'm not too far away from ending up back in the ER for anemia and dehydration.


My first and biggest question is, what does remission look like? It seems like since I was dx and started treatment, I've had more problems than before I even knew I had this. On the other hand, what does a flare look like? How do you differentiate between flare and I shouldn't have eaten that corn?


Second, how do I manage UC and diabetes? These days i'm living on Gatorade and white foods, which sends my blood sugar to the moon.


Finally, any ideas or suggestions about what I might do differently or in addition are greatly appreciated. I've got a 14 year old son with Autism, and I don't have time to be sick.

Post Edited (NutMeg1987) : 6/18/2018 12:34:00 PM (GMT-6)

They did not admit me to the hospital. My new doctor had me on steroids, high dose 60, for about 6 weeks, then tapered by 10s til I was off. That was when I first started seeing him and we were working to get me on Humira. Unfortunately for me, because I'm diabetic, steroids put my blood sugar on the moon. I'm afraid with the situation like it is now, I'm going to have to do another round of them to give the Imuran time to work.

The doc didn't think it would be any use to add in the mesalamines since they really didn't do much on Occatheir on. My insurance only pays for so many rx a month, and my diabetic meds are also high $$$. No enemas, either.

No one has said how bad it is, but based on number of bms, I'm thinking it is moderate to severe. It is pancolitis. I did learn that much from my first doctor.

Right now, I am having at least 8-10 bms during the day, and getting up at least twice at night. Occasional blood, some cramping. Bms are not really formed, but not complete water either. And I have a fever off and on ranging from 100-102. And I'm fatigued, nauseous, seeing a little red aura on the edges of my vision.

The doc is staying on top of that. I'll also mention adding mesalamine again, when I go back. Mesalamine alone was not very helpful for me.

A lot of the worst symptoms (urgency, frequent BMs, blood and bloody mucous) come from inflammation in the left side (rectum and sigmoid) so mesalamine enemas can help a lot too, at least for some people. No drug is effective for everyone.
Did prednisone get you into remission? If prednisone is working, I wait until I am fully in remission and then taper relatively slowly once I get below 30 (5 mg a week). 10 a week is way to fast IMO.

Welcome! As you can see from my siganture, mesalamine didn’t work for me so I am now on Humira, though that may be short lived as well. I lost 8lbs in the past week and a half bc of the number of BMs I have (it’s pred weight, so I’m not too worried). In trying to stay hydrated and not anemic, I have found that a lot of the typical drinks have sugar free versions. There are also some sugar free electrolyte powders available. I also find that I can eat some lean ground beef and turkey to get iron without upsetting my insides. I sometimes will throw some into broth or mix with cream of rice (wheat bothers me these days). Scrambled eggs or homemade egg drop soup are also great options that are low on the carbs.

Suchatravesty, I LIVE on eggs.

I understand that coconut water is high in electrolytes without the sugar if you get it without added sugar. Even coconut sugar is a low glycemic sugar.

Being a mom, I get it being hard being sick with kids that need you. I hope you get some relief. I got mesalamine induced acute pancreatitis and my gi still risked it with me and tried the enemas. It helped until it started giving me pancreatitis symptoms. I am sorry your insurance doesn't cover them. That stinks.

From the studies I've seen, Humira is one of the least effective biologics for U.C., but it is the cheapest, and usually the one the insurance companies want you to try first (because it is the cheapest).

Since you were taking steroids and Humira at the same time, how do you know that it was the Humira that was helping and not the steroids?

There's seldom one, single medication that's our silver-bullet and solution at 100%. However, the cumulative affect of multiple medications is often enough to put us into a remission. I found a remission by being on all of the following simultaneously: Remicade (a sister medication to humira), 6MP, lialda, rowasa enemas, and prednisone.

That said, adding back lialda and rowasa enemas makes sense for the cumualtive affect, even if they were not 100% effective by themselves. Try adding them both back for a month and see if there's any improvement and then keep/discontinue accordingly.

Consider adding imuran/azathioprine/6MP to your medicaiton mix. It'd take 3-months to see results from those meds and require regular blood work.

What is remission and a flare? Remission is heaven and bliss, you're essentially pre-UC (for me one solid, bm without urgency and without blood a day). Flares are hell incarnate, when all we think/worry about is pooping and accidents all day long. Simmering inflammation is still a flare but a bit milder, call it being in purgatory, we're limping by and living but still making excuses and living with limitations as a consequence of UC symptoms.

A percentage of us have a mild fever when flaring, not unusual, and nothing at all to worry about. Just make sure you do NOT get a high fever, as that is suggestive of a serious sepsis or toxic-mega-colon (both rare but important to be cognizant of and require hospitalization).

Steroids spike blood sugar, tougher when you're a diabetic. Alternatives to steroids for a temporary basis would be hospital-inpatient administered, IV cyclosporine or IV tacrolimus both of which are strong immunomodulators. Sometimes double-doses of a biologic like your humira or remicade are temporarily used in place of steroids to get a quick response. You can ask about these options and see what your gastereoenteroligist says.

Yes, azathioprine takes forever, 3-months minimum. A faster alternative is IV-based or oral-pill-based Methotrexate. It's a lot faster working than azathioprine/imuran/6MP. Our Crohn's disease friends use methotrexate as one of their flare and/or maintenance meds, and it is a bit uncommon for UC but has been tried with some results.

If Humira and Mesalamine are not working, I would probably try remicade or entyvio. If you are sick enough to have a fever, you are probably past the point where mesalamine can hope to control it. No harm in maxing out oral and rectal mesalamine though. As iPoop pointed out, the effects of anti-inflammatory drugs tend to add together. Sometimes you need several meds working together to get into remission.

Don't wait around too long, especially if you are losing weight or getting severely dehydrated. Move on to the next level of treatment options.

Post Edited (C_G_K) : 6/20/2018 11:23:31 PM (GMT-6)

Yes, common. Our doctors do not have UC, nor do they suffer from it themselves, and it's easy for them to pooh pooh, our poo poo issues. It's important for you to be your own best advocate for what you need to be well and be persistent. Keep calling, be a hornet in their ear, and get the treatment you need. Nobody wants to be a pain in the butt, but to solve our UC pain in the butt issues we need to be sometimes.

If you doctor is on vacation, there should be another gasteroenteroligist who's on-call, and can help you during that absence. A good thing as this different doctor might be more receptive, or try different things.

Post Edited (iPoop) : 6/21/2018 6:47:57 AM (GMT-6)

NutMeg1987 said...
I was suppose to see the doctor next month, but with the blaze I've got going, I don't think I can wait. I came close to passing out tonight. I'll have to see an NP because my doc is on vacation, which doesn't give me much hope they will do anything but blood work.

Does it ever seem like to y'all that the doctor or his people don't have very much urgency about things?

Yeah, that's an understatement. I got lucky with my current GI. He gave me his cellphone number when I was hospitalized and very ill. But it can take days if I just call his nurse. And I have had past GIs who took weeks to return my calls.