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My doctors is not very helpful and I’m a bit lost:(

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Ulcerative Colitis
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Posted 10/9/2017 2:03 AM (GMT 0)
Hi all!

I am 21 years old... I was diagnosed with ulcerative colitis August 2016 after experiencing worsening symptoms for 4/5 months.

At first, my doctor tried treating my flare-up with only mezavant and an enema which was not really effective. After that I went on a tapering of prednisone for 6 weeks and felt much better! That ended about November 2016. Since then, I’ve only been on a high dose of mezavant. At first, my stool tests and blood tests showed that the inflammation was going down nicely, but around April 2017, the inflammation was back up to the numbers of my flare-up last summer. I was not experiencing the same severe symptoms, but definitely having some stomach pain and more BMs. My doctor wants to put me on something much stronger; I’m a bit of a naturalist, and that kinda freaks me out!

Another point is that although my doc is considered one of the top where I’m from, he is not very good at discussing options which doesn’t work for me. He also claims that diet has nothing to do with healing or managing symptoms of colitis. In the past 4 months, I’ve kinda went off on my own and tested out different foods that work or don’t work for me and Have been successful in alleviating a lot of symptoms, my BMs were still a bit soft but not quite diarrhea, and I was rarely having stomach pain. I’ve even begun seeing a registered dietitian about it.
Im in a waiting list for another doctor, but here in Quebec I can wait more than 6 months for an appointment and since I have a doctor already, there’s no pushing for quicker servicesad

So now that you’ve all gotten my whole story, here’s my question: Lately I’ve been off my diet for about 2-3 weeks, as I am Jewish and it’s holiday seasonsmile the whole family is around and we are all eating a ton! I’m having a really hard time controlling myself around the “social eating” and Im having lots of BMs again, and a lot of pain. Since that’s begun, I’m gaining control again, but now I’m wondering if the diet really helped at all, or it just alleviatedsome pain. Also, I’m due for a stool test, as I have a doctors appointment in one month, I’m not sure if I should push it off until I’m “back in the band wagon” or it won’t make a difference to the numbers anyway?

I just came across this forum, and it looks like an amazing space to share, gain insight, and support! I’m excited to become a part of this amazing support you’ve built! I hope some of you might be able to help me with my concerns now...

Thanks in advance!!
Posted 10/9/2017 2:24 AM (GMT 0)
Diet does more for symptoms than treating inflammation or healing mucosa - but for some, some diet changes and/or adding some nutrition supplements (or probiotics) have helped with more than symptoms.

take great care in discussing diets with docs to make sure yall are talking about same things. You said the doc said diet did not do much for symptoms - but maybe you just heard that. Maybe the doc said that it does not do much for IBD. Most docs are focused on reversing inflammation and eliminating risk of colon cancer. IMO they do not pay enough attention to our symptoms and quality of life.

It does sound like you need stronger meds, and that is the only "option" you can expect the doc to discuss. Until nutritional therapies get solid evidence and make their way into the standard of care, it is not a tool in the doc's toolbox.

I would add anti-inflammatory foods, consider fibers that will promote butyrate fermentation, add probiotics, and avoid foods that seem to put your gut microbes into disarray.

good luck

Post Edited (DBwithUC) : 10/9/2017 10:55:36 AM (GMT-6)

Posted 10/9/2017 2:37 AM (GMT 0)
sorry to hear this, with the uncertainty surrounding UC & CD, all doctors have different opinions/ways of doing things. Some GIs will swear by diet, others like mine will dismiss it and wont give it much consideration. Some say natural remedies are a big part of it, others say medication is the only true solution. so a lot depends on your doctor. that's why i agree with what you're doing and seeking a 2nd opinion, i think most UCers should have a secondary GI to meet with every once in a while during a flare. I am actually going to see a specialist who is a frequent speaker and expert on IBD. He takes 6 months to get an appointment so he will only be there to assist when needed, i will continue to rely on my primary GI.

medication is so different for every person, doctors can only take their best guess. Some of these medications can have poor side effects so it is so important for you to discuss with him/her what side effects are common and when you should call them if you're experiencing any.

i would say for diet, if you are committing to it, you have to do your best to stay committed. everyone has cheat days, but if you can make a large effort otherwise, cheat days wont be a huge problem. diet for UC is one of those things where it can only go as far as you let it. if you follow it consistently, you will see results. if you keep cheating it, it becomes pretty worthless. once you get into a routine, you will have no problem at all.

this forum is a great tool, i hope you become a contributing member and keep us updated on how things are going.
Posted 10/9/2017 12:00 PM (GMT 0)
Doctors dispense RX meds, that is their metier. As DB said they are primarily concerned with inflammation. My GI's rarely wanted to hear about my symptoms which were life-changing and terrible. This is my biggest issue with the GI world, little help for what causes us greatest problems daily, they just want to make sure we don't die.

So I did diet modification on my own and found a GI who was not rabidly anti-diet. However even after all this time, 8 years with current GI, and getting myself into remission with no help from RX (except enemas are helpful) he still glosses over diet as being my biggest benefit.

Take your health into your own hands, stay away from internet quacks who promise the moon if you buy their products, keep a list of what foods and drinks cause problems.

Someday GI's will become holistic and begin treating the whole IBD patient and I include mental as well as physical. Not all of us with UC get a lot of benefit from RX, it takes more and they don't have backing from the medical community to give us more.
Posted 10/9/2017 3:12 PM (GMT 0)
It's definitely a good idea to look into diet-mod. It won't hurt to try. However I wouldn't refuse stronger medication if that's what I needed. I hope you'll find your way. Good luck.
Posted 10/9/2017 8:22 PM (GMT 0)

the OP said...
He also claims that diet has nothing to do with healing or managing symptoms of colitis...

I’ve kinda went off on my own and tested out different foods that work or don’t work for me and Have been successful in alleviating a lot of symptoms

Your doctor may be right about diet having nothing to do with healing and managing symptoms, for some people. But for others like myself diet is crucial for maintaining remission. Doctors don't know everything. Ten years ago most doctors pooh-poohed vitamin D and probiotics, but now even the most conservative GIs see their benefit.
Posted 10/11/2017 3:05 AM (GMT 0)
Thank you all so much!
I’m relieved to hear that I’m not the only one to have such an experience with my GI. It’s so great to have this support from people who understand what this is all about...
I have one other question; how long do you think it’ll take for the diet to take effect if I want to wait to see how much of a difference it can make to the inflammation?
Posted 10/11/2017 12:48 PM (GMT 0)
If diet mod. helps it will not be an overnight miracle. In my case it was slow but seeing small improvements kept me moving forward, testing every food multiple times. Constantly asking myself "Does eating this this make me worse?"

You need to be completely honest with yourself and keep a food journal. If at the end of 3 months you see improvement then you may decide to keep going. If in 30 days you don't see ANY improvement you may decide it's not working for you.

Because we eat so many different things during a day it's very hard to sort out which food(s) may be causing symptoms. It's very hard to diet mod on normal days but holidays or nights out with friends are the hardest. Not easy so be mentally prepared.
Posted 10/11/2017 1:15 PM (GMT 0)
You might consider an elimination diet. Essentially eat the same, exact thing day-to-day to know your baseline and then reintroduce individual foods back in one at-a-time and see if there's noticable changes good/bad.

There's no guarantees food aggravates your symptoms. For some it does and for others food doesn't. Diet modification did nothing for me, yet some swear by it. All you can do is try and see what your results are. Keep it if it helps and discontinue if it does not. Uc is very variable person-to-person, so there's no predicting your response.

Cheers!
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