Hello! - Crohn's story & Diet questions

[KayessB]

Hello!

My name is Kaleigh & I'm new to the forum. I was diagnosed when I was 17, now 22. My case was very mild at the beginning but has taken a turn in the last year or so. I'm currently tapering off prednisone which was started at 20mg/daily (for a little over a month) and am now on 7.5 mg/daily along with 6mp & pentasa.
I have been dealing with severe constipation and unbearable cramping due to inflammation in my ileum. They couldn't get the barium suspension through it when I did that test, and at my last colonoscopy, it was shown nearly closed. That's when my GI started me on the meds I listed earlier.
They have helped significantly and now my symptoms are much more tolerable, including: severe bloating, mild(er) cramping, and fatigue.

My diet questions- I guess I may be confusing with inflammation. I'm not sure if my bloating is related to something I'm eating or if it's my inflammation. If the inflammation is down with the medications, wouldn't bloating have to be because of my diet? Or because my system is slow, could it be due to the back up? It's all confusing to me. I tried documenting my food intake for about a week but gave up when nothing was worse or better or making any sense! All I know is that the bloating is not constant. And I notice it a lot more when I'm taking in a lot of fluids. :shifty-t::ylol:

 

[UnXmas]

It can be difficult to work out which foods worsen symptoms, and it may be that the bloating isn't related to what you eat. Sometimes symptoms can fluctulate or come and go regardless of what you eat.

However, with your situation and the risk of blockages, I would ask your doctor what is best for you to eat.

 

[24601]

Welcome to the forum!

It's certainly not easy to know what is causing our symptoms at times - because there can be a number of factors. But since you had a severe narrowing it could be that even if the inflammation has reduced and the narrowing opened a little, that section of bowel may still be narrower than it should be and causing bloating and cramping. That would be consistent with you noticing more bloating with increased fluid intake. The best way to tell if this is the case is probably to do an MRI scan. Have you had any scans or other imaging since they've started these new meds?

 

[David]

Greetings and welcome

First, have you had your vitamin B12 level tested?

Second, has anyone brought up the idea of enteral nutrition to you?

 

[KayessB]

24601- I haven't had any scans or testing since the medication. Just blood work with the 6mp. He has me scheduled to see him in a couple months and doesn't seem concerned with any further testing. I ask if I need this or that, and even regarding surgery, and he just says "you'll be able to tell me if you need it."
David- I haven't had my B-12 tested. And no, I've never heard of enteral nutrition!

 

[David]

DEFINITELY get your B12 tested! And read up on enteral nutrition here and discuss with your doctor (when you're demanding they test your B12) if it is a good option for you if it's something that interests you.

 

[KayessB]

Okay, I'll look into that! And I'll see if I can move my appointment up for the B12. Thank you!

 

[24601]

Well, it's a lovely idea that we know exactly what our bodies need at any given time (and I'm not dismissing the idea that our own observations of our symptoms or the impact on our lives are very important) but I don't believe that it's possible for us to know exactly what is going on inside just from our symptoms - there simply is not a one to one correspondence between symptom and cause, rather one symptom can have several causes, and any given complication of Crohn's can often present differently in different individuals!

If your doctor is saying that it's up to you to decide when you need tests and scans, well, it would seem like he's asking you to be the doctor! As long as someone is being the doctor then that could work fine...but the question is how do you feel about being the one to make those decisions? Even for those of us who like to have a big say in such things, it really helps for it to be a partnership. I don't think we can be expected to know it all

Do you know how your response to your new meds is being monitored? Inflammatory markers in your blood or fecal calprotectin levels? Or both?

Have you and your doctor agreed a target (and timescale) for these meds and what you will consider success? Conversely what will you consider an inadequate response which would necessitate modifying your treatment?

When were the barium follow through and colonoscopy attempted? And did your doctor say when these should be repeated? I'd consider it necessary to make sure these findings have changed.

Also given your young age I would prefer to use MRE over barium follow through to minimize your radiation exposure.

Exclusive Enteral Nutrition (basically a liquid diet instead of normal food) may well benefit you but it would be useful to at least look at your inflammatory markers before starting to give an idea whether you are benefiting from the anti-inflammatory effect that it has for most people rather than symptomatic relief due to physical narrowing in your bowel.

While your new meds may have significantly reduced the inflammation, you may need something more to get rid of all the inflammation and (longer term) to achieve mucosal healing - EEN or infliximab would both seem like candidates.

And of course you may have unfortunately been left with some permanent narrowing from scar tissue. That can only be determined from imaging (and I'd highly recommend MRI over anything else) and the imaging would be best done when your inflammation is as much under control as possible.

When did you start 6mp? Because that usually doesn't get to therapeutic levels until about 12 weeks.

Sorry for all the questions! I just feel like your doctor has left you to your own devices a little! And that's a lot to take on! Have you considered a second opinion?

 

[KayessB]

My doctor is very... Hm. Lacking in bedside manner? My appoinments with him are very short and if any decisions are made they're made quickly and I'm given no explanation and there's no real discussion between us. It's hard having a doctor that I don't feel will listen to me or take me seriously! I AM left to my own devices!! Unfortunately with my insurance and where I live, my options are slim and he's just the best I can get for now. My response to the medication is not being monitored. The only thing being tested is my blood since he's put me on the 6mp.. We haven't discussed anything about the medications or what would be considered successful or inadequate. I almost feel as though he thinks the pred/6mp combo is the cure all and this is what's going to help and if it doesn't, were looking at surgery. I assume this, of course, but those are the only two options he's given me.

Follow through was done in February this year, colonoscopy in march. And I was thinking the same thing- repeating the tests to see if anything has changed, but he hasn't said anything about doing any further testing and just insists on the idea that "I'll be able to tell him" . I started 6mp on march 16 with prednisone.. I'll be on the prednisone still tapering for the next couple of weeks. He wanted me off the steroid sooner than later because of the side effects and suggested I "power through" until the 6mp starts to kick in.

And I appreciate your help! Ask all the questions!! While my doctor does help as far as getting me what I need, he's very narrow minded, I feel, and not personable/helpful at all when it comes to what my options are and monitoring changes and such. And not knowing exactly what I need or what my best options are/options at all, I have no idea what to do! At least now I have some idea of what I need so I can request it myself, so thank you!!!

 

[AirCooledChillerMech]

Good morning everyone,

My name is Michael,new member and new to the forum aas well. Thank to everyone in advance for your stories,advice,support and help.

Kaleigh, found your post very interesting, Thank you for sharing. When i was first diagnosed the GI Doctor
i had at the time i was not at all comfortable with, (I felt very rushed,when asking questions was not given through answers,office visit waiting time was 45-90 minutes after my scheduled time.) Researching,found a fanstastic group i am now extremely comfortable with. (G I Specialisr of Georgia).

Keeping a food log can be very hard, I keep one for 8 months and over the years I know my limitations if you will. As far as the bloating and cramping you described,I can relate ALL to well. I posted 3 photos of my bloating in my profile. I was just in the hospital the week of March 23.Another flair-up. Started with a light liquid diet after coming home but started gettung back to "my regular diet" but am 110% miserable just eating smaller portions since then.

I have been on Asacol, 6-mp, Pentasa, Endacort, my share of Prednisone and am still waiting to get on Humira at the moment. Another problem i also have is hydration, absolutely no energy at all, get hot and cold spells, weak legs and sore muscles.

@ David, Thank you for all that you have posted. Been trying to read as much as I can from your posts.

Sorry if i got off track.

Best of luck to everyone,

Michael

 

[KayessB]

Thank you for sharing! It really is a set back to have a doctor you don't feel supports you. I am there with you on the lack of energy and sore muscles. Never feeling quite myself. Good luck to you and I hope things get better on your end!

 

[AirCooledChillerMech]

Thank you KayessB... Praying for you...