New here Boyfriend has UC

Hey guys I'm brand new here and I have so many questions. My boyfriend has had UC for 10 years he's been on Remicade for 7 of those years. While the side effects from the Remicade terrify me the idea of him being terribly malnourished and miserable is far worse. I've done a lot of research but I came here because I value actual patients opinions more then reading case studies because I realize how this disease effects everyone so differently.

He has left sided colitis and a year ago he had a colonoscopy that showed that he had 10cm of active colitis. he went in for the antibodies test which luckily he has very low numbers( almost none) but the levels of Remicade in his system when he took the Prometheus test were at a 3. His GI wants him at least a 5. They upped his dose of Remicade from 5mg to 7.5 and kept him at the 8 week intervals. He currently also takes two lialda tabs with breakfast in the morning. He's had 2 of the increased doses. The last one was a week ago.

What should I expect when he's in remission? How long should it take for the upped dose to work? I learned that sometimes the dose increase doesn't have any effect at all?

Currently he has about 2-6 BMs a day with some urgency but not always. He doesn't tell me the details of if its bloody or has a lot of mucous except that they are loose and aren't fully formed. He does seem to notice the urgency/ frequency return a week and a half before his next infusion. He also is stubborn about diet while he cuts out high fiber foods he still loves his coffee, spicy foods and loves sugary pastries and will occasionally get a drink. His GI seems to think that diet doesn't trigger flares...I don't believe that at all because I know that his UC flared the worst before he was on Remicade when he was in college drinking a lot more heavily. I also have read many good things about the SCD diet putting people in remission. I've also been reading about the new research that has to do with the correlation between UC and gut bacteria and I know that many things he likes to eat strip the good bacteria from our intestines. I believe that he could possibly achieve remission again if he cut out a lot of the crap he still continues to eat. Is that false hope?

As his girlfriend who has interest in a long lasting future where is it ok to voice my opinion? It's hard sometimes because we eat a lot together and I want to cook healthy meals but I know there are things he will absolutely avoid and with good reason. But at the same time it's very frustrating to see him purposely drinking coffee in the morning before work because he knows it stimulates his bowels and he wants to empty them before having to drive anywhere. Won't that just make him more likely to flare?

Sorry that was a lot in one post but I appreciate all of the help I can get.

Post Edited (Aries324) : 2/18/2017 12:50:31 AM (GMT-7)

you have a mix of knowledge about gut microbes and individual variation in uc, and some preconcieved notions and incorrect ideas, you want ammunition to micro-manage your boyfriends diet.

this does not sound promising

Diet is a very mixed bag and as successful as something like SCD is for some it doesn't work for all. I had Crohn's Colitis and tried SCD diet twice with no success. Also some of these diets are extremely hard to comply with when even the patient is the one who is motivated so if the patient isn't interested it would like only be a short term fix.

While I do believe bacteria and diet play some role something like coffee may aggravate someone's symptoms but it definitely isn't what's keeping him in a flare, that's a much too simplistic view.

I would tread very lightly with suggesting diet. For me personally it was a touchy subject. Partly because I had tried things in the past like zero sugar or zero gluten and still flared. And sometimes it felt like people acted like I wasn't trying hard enough to get better.

Just encouraging some healthy eating or cooking healthy dinners would be helpful just to help anyone who is chronically I'll stay more nourished.

What should I expect when he's in remission? Remission is an absence of UC symptoms, he's essentially normal. When I'm in remission i have 1 bm a day that's nonurgent, and i can forget i have UC.

How long should it take for the upped dose to work? Could be quick or could take a while.

I learned that sometimes the dose increase doesn't have any effect at all? Sometimes it does nothing.

I believe that he could possibly achieve remission again if he cut out a lot of the crap he still continues to eat. Is that false hope? Hit or miss, for me diet modification did absolutely nothing.

Coffee is certainly a bowel stimulant, so it can increase his BMs in the morning, but as far as I know it's not known to be something that leads to flareups of UC.

As mentioned by others, some people seem to be helped by special diets, but many others have tried special diets and found no benefit. If he wants to try, go for it. But *making* him try a diet, when there isn't strong scientific evidence for diets in treating UC, will be tough to convince.

And what foods people can tolerate or can't is very individual. I remember a support group a few years ago where a guy was saying "I can eat tomatoes but only if they are raw," and the very next person says "raw tomatoes KILL me, but cooked tomatoes are fine."

In full remission he should be able to eat just about anything other people can.

But short of full remission, things like nuts, seeds, popcorn, etc - things that have roughage that can make it intact into the colon and 'scrape' the colon walls can be irritating and/or painful.

It's fairly common for people on Remicade every 8 weeks to start becoming more symptomatic as they approach the time for their next infusion. Sometimes that's an indication that their body is running low on Remicade at that point. Upping his dose, as he did, sometimes is enough to fix that. But sometimes people also need the higher dose and increased frequency of infusions, ie, every 6 weeks, and sometimes even every 4 weeks. He'll need to work with his doctor, get his levels checked again after a couple more infusions of this higher dose, and go from there.

There are other drugs besides Entyvio. There is also stelara. And xeljanz, if it hasn't already been approved, may soon be. And there are several more in the pipeline that should get approval in the next couple of years. So I wouldn't worry too much about him running out of medication options. The more pressing issue is to maximize the odds of success on Remicade.

He could increase the Lialda. There should be no harm there. But once on Remicade, many people stop Lialda. That's often because the Remicade puts them in remission and is so much more powerful than Lialda that it becomes unnecessary. But if his Remicade infusions aren't giving him full remission, staying on Lialda is probably a good idea.

And, yes, some people do 7.5 every 6 weeks. Some even do 10 every four weeks. So he still has some flexibility in terms of upping his dose further if needed. And the side effects aren't significantly worse on the higher doses.

Adding immunomodulators like imuran or 6mp is often done for a couple of reasons:
1) better overall response, though it's only a *little* better statistically speaking
2) the immunomodulators reduce the risk of developing antibodies to the Remicade, allowing the person to stay on it longer. This risk is pretty substantial. Last data I saw was something like a 12% risk per year per person of developing antibodies, that gets reduced to about 3-4% risk per year per person with the immunomodulators added.

The drawbacks are that some people can't tolerate the immunomodulators - either nausea, elevated liver enzymes indicating liver damage (that is reversible), or infrequently, pancreatitis, which is very serious but also reversible.

Also the risk of infection goes up, but statistically only slightly, so little that it's not a big concern.

And for young males (teens and twenties), the combination has a tiny risk of a deadly form of cancer known as HSTCL - hepatosplenic t-cell lymphoma. It has happened a few dozen times out of hundreds of thousands of people, but it has no treatment and is nearly always fatal. Nearly all cases were males aged 12-25, if I remember correctly.

I'm currently on Remicade and also started the Autoimmune Protocol (AIP) Paleo diet.

AIP Paleo is basically a restricted version of the Paleo diet. The Paleo diet eliminates all dairy, grains and legumes--foods that seem to pose problems for a lot of folks. AIP Paleo eliminates these three food types, but also cuts out nightshades (tomatoes, eggplants, etc.), bell peppers, eggs, pepper based spices (cumin, red pepper, etc.). Some of the more well respected folks in the Paleo realm also recommend drastically cutting back on fruit at least initially since the carbs/sugars in fruits seem to cause problems with a lot of people with active colitis.

Some people will definitely argue against cutting out fruits for a while, but if you eat a lot of vegetables, then you won't be losing out on any nutrients. This is what I am currently doing and have only been doing it for three days and have already noticed some improvement. We'll see how well it works, but I think it is definitely worth trying for a month--strict adherence to the diet for 30 days and see how it works. If it works, then that's awesome and if it doesn't, then one wouldn't have lost much.

One way of approaching your boyfriend about this would be to simply ask him about which foods bother him. He would also probably be much more likely to try out such a diet if you joined him in it--that support is crucial for a lot of folks. Perhaps you could tell him that you're thinking about going Paleo and then see if he might be interested in doing it with you.

Also, I've tried out different diets before with the intention of improving my symptoms, but hadn't read any books on the diets I tried out before I started. I just finished up the The Paleo Solution by Robb Wolf. I highly recommend it. This book is very humorous and the author has a PhD in biochemistry and explains why some foods cause certain problems. Diet aside, this is honestly one of the best books I've read in a while. You can find used copies on Amazon for $5. If you don't look into this book, then at least read up on AIP Paleo online--don't just take it from me. There's a lot of great information online about AIP Paleo that is totally free. Some websites I have found to be valuable are: thepaleomom.com and againstallgrain.com

Anyways, perhaps read the book and then see what you think. If you read it and think it's worth a shot, then perhaps it would be good for your boyfriend to read it too--I think it might ease some of his concerns about starting something that most folks perceive as drastic and also give him some motivation to start it. Like I said, there's not much to lose if it doesn't work--perhaps $5 for the cost of the book and a month of eating healthy foods. However, here is a lot to gain if it works. Definitely think your boyfriend would be much more likely to try something like this out if you wanted to do it with him. I hope I continue to see improvement from it and hope your boyfriend finds success regardless of how he decides to treat his UC.

I should probably also clarify that I'm not recommending he go off his Remicade, but simply explore AIP Paleo to see if he thinks it might be worth trying out. I am still on Remicade, but am also trying AIP Paleo.

I don't know if he's tried anything like Rowasa. I know at a lot of medications didn't work well for him but because it's like Lialda I think it could really help if he tried it I'm not sure if it's my place to bring it it up. If he's not building any antibodies would the immunomodulators really do anything beneficial? His GI says there are 2 reasons why his levels are low and he has active inflammation. 1. He's starting to lose response because people have about a 13% increased chance of losing response for each year he's taken Remicade which makes sense. 13 X 8. Reason 2 because he has active inflammation again his body is using up all of the medicine too quickly. My only concern is if the medicine isn't bringing him to a full clinical remission then why isn't his GI monitoring him closer?

I realize how very individualized colitis can be which makes it hard to know how it's affecting my boyfriend. I appreciate this forum being here because it gives me so many different perspectives. I know a lot of times it's not my place to involve myself but when you're invested in a future with someone the whole "in sickness and health" part is important to me. I want to have as full of an understanding as possible so I can support him to the best of my abilities.

The only way i reached remission was to throw a lot of medications simultaneously at my UC: Remicade (which is similar to humira) and 6MP and lialda and rowasa and prednisone. UC inflammation and flares can be very stubborn and take a lot of medications to treat. Each medication has a different method of working, combine them for the strongest effect. And once a remission is achieved, you reduce meds as it takes more to achieve a remission than to sustain it.

Since he's not in remission it's time to shake his treatment up, get aggressive, and try new treatments. As more of the same just isn't working or enough.