New specialist. Should I go back :(

In brief. I also have an underactive thyroid and currently trying to get my medication right for that as well. I was diagnosed with UC in 2004. My ex has thrown all my medical records away so I am starting from scratch.

I am on salofalk granules, but I only take them during a flair, as when I take them my face and tummy blow up like a balloon. And when I eat diary, bread or anything fatty my tummy looks 30 months pregnant.

I haven't been the greatest patient clearly, due to my major fear of colonoscopies. I have had many but I just can not get my head around them.

I gave up smoking a year ago and I have not been well at all. Tired all the time, continue to get the bloating, and bleeding. I basically am in bed by 9pm each night. I couldn't work 5 days anymore as I had just had enough and was getting so cranky and tired.

So yesterday I finally went NEW specialist yesterday. I am concerned :(

I told him my face swells when I have the solafalk and he said he never heard of that before or the weight gain when I take it

I said we will need to work out a plan on what I can and cant eat and he said, well u can eat whatever you like.

I told him my legs get sore before a flare and he said he didn't want to pin that down to UC


Am I over reacting to be worried :(

sorry I forgot to add.

his chasing up all my old results. and he said when I go back in 6 weeks then we will make a "plan"

Sorry to hear you are not doing well and fell you might not get the best cares.

You say you haven't been the best patient. Did you refused to have a colonoscopy ? Is this why he is tying to track your old medical records before setting up a treatment plan ?

Where was the inflammation last time you had a colonoscopy?

Are you absolutely sure the swelling you experienced was from the Salofalk pills ? Could that not be from anything else ?

I beleive that if he does not have a clue about the extend of your UC and you have refused to have a colonoscopy and can't take salofalk it might have been a sensible thing to try to get your medical records before setting up a treatment plan. But then again how bad is your UC presently ?

If you really don't fell comfortable with him you should switch but I get that it might have been hard to know how to help you out if he did not have any medical info about your medical history. Plus, adding the fact you have underactive thyroid that is not well controlled is it understandable he needs more information before treating you.

Though I get how bad you must fell. UC brings so much anxiety as nothing is really clear... We never really know why we flare, why such med works or not, how we are going to be in one month and so on.

I too went from working 5 days a week to 4. But mostly I needed it more because the worries and anxiety about UC was eating my strength. That way I get a little more time to do stuff such as gardening a little that helps me relief the stress. I like having Wednesdays off. I fell I only have to work 2 days before I get a rest.

All in all I would give him a chance to see what are is plans for you once he has your medical information unless you really have a wrong felling about him. about what to eat it seems that most GI are not very helpful with that point as we all are different. Reaserch here about what has help others but you have to try different stuffs until you find what is right for you. Low FOODMAP has help me a lot with swelled, bloated belly as well as with cramps.

hope you find some answers here that will help you.

You can have a colonoscopy without sedation. I have and it's fine. somewhat uncomfortable and certainly kind of gross, but not unbearable. also, it's nice to get the direct feedback during it.

I think you would do well to continue with this doctor for the time being. Also, when he says you can eat what you like, put another way that means you can certainly try a diet and see if it helps. I can see why without more information he's hesitant to say much more.

good luck.

The IBD AID diet has shown success. And there are one or two papers on SCD's effectiveness in children. It's impossible to do double blind placebo controlled diet studies and it's clear that diet isn't effective for everyone, but that doesn't mean it doesn't help some. Even if it just helps with symptoms, that's a help.

That said, I fully understand why a GI would not just tell someone in a flare that diet helps. they wouldn't want someone to reject needed medication in the hope that a diet change would fix them.

Post Edited (FSLondon) : 6/24/2015 6:40:44 AM (GMT-6)

I think the biggest problem with doctors regarding diet information is that there is no one size fits all. What most of them should be saying is that yes, diet can make a difference in many people, particularly with problem or trigger foods but since all patients are uniquely individual there is no one size fits all it is useless for them to recommend anything in particular and you have to figure it our for yourself. It's just easier to say that diet doesn't have anything to do with UC.

I continue to think al lot of the confusion is because patients consider symptoms and inflammation as one thing. Medical research makes a distinction.

So you have diet only helping some people with symptoms, and diet mostly not helping with auto-immune. This leads to a lot of confusion, and many doctors are not the best communicators to begin with.

Also need to add that quoting smoking triggers flares and actual onset of UC in some folks! Try a patch for UC symptoms I have heard good things