High level of symptoms and remission

[Cosmojo]

I have a couple of complicating conditions with my Crohn's, such as Hashimoto's and Cluster headaches, and arthralgia.

How high is your remission baseline? I am still having D multiple times a day, lack of appetite, and abdominal pain. They are suggesting if the MRE shows nothing that this is my new normal and that whatever other symptoms I have need to managed with pain management ect. Still checking for outside chances like pancreatitis, I am really careful about what I eat I guess I just thought that true remission would be easier. Do I keep looking for answers or just accept that this is as good as it gets with medication?

MRE could still show active inflammation but doctor doesn't think its very likely with as good as my scopes were.

 

[rollinstone]

Never stop looking for answers until you're in the happy place you want to be in, I know you said you watch your diet, what do you eat exactly? Have you thought about giving paleo or scd ago? A lot of ppl have success w these, I know for me scd always seems to give me formed bms

 

[rollinstone]

Also i was getting cluster headaches so often, iv started having magnesium baths n they've helped so much, not one headache since, heat packs on the back of my neck also work a treat

 

[Cosmojo]

I don't eat any raw fruits or veggies, pork, spicy food, very little dairy, nothing with seeds or peels. I've done gluten free before but it didn't help, I have considered slowly going to scd, it's just a big commitment. I'm working on gradual changes right now and i keep a pretty detailed food journal, usually carbs are the only thing I can tolerate at times like this. I still go through phases where my symptoms get a lot worse for no reason and then maybe 3 months later get better again, so I'm fairly convinced it's still not understood.


I struggle with the fact I have so many things going on that no one tries to connect but rather treats each condition or symptom individually. I've never heard of those baths before for cluster headaches, I'm just on high dose beta blockers. Have you ever had any success getting a doctor to look at the full picture instead?

 

[If*]

Hello, how is your hydration? Sometimes dehydration can cause headaches, so keep an eye on your fluids.
I can not say 'this is as good as it gets' i want better! It can be different for everyone, what we are willing to tolerate. How's your stress? Have you tried relaxation, meditation. It might help. Another thing that can cause cluster headaches is stress. Have you had your b12 checked?

Diet is so darn frustrating at times, really so individual. How's your protein intake? Sometimes animal products can be difficult to digest, have you tried hemp protein? There are good organic brands out there, i like Nutiva 15g protein. If you try it start slow, it can cause bloating in some.

IBD blows, it can swing almost any direction at anytime ~ which is why I can never say good enough. Even if feeling pretty darn good, i will be trying to build up for what might sneak up.

Hang in there, i hope it swings in a better feeling direction for you

 

[Cosmojo]

Thanks I am just frustrated cause I'm so sick and very little is actually "wrong" all my labs are borderline. CRP is elevated, iron is a little low, B12 is fine but I take a ton of it every day. They even see some inflammation on a CT but not enough to warrant a change of therapies.

We are still running tests but its hard being in "remission" and still calling in sick for weeks at a time, it gets bad for a few months and then gets better. I still have more Cohn's results to see, but if those are negative its time to look elsewhere. Chronic pancreatitis test should be back soon.

 

[If*]

I think with ibd it is a combination of labs, test, symptoms and whatever else can be going on. Plus things can change from day to day and even throughout the day.
My labs are most often very good compared to others. They can be very person specific. Some have a CRP in the triple digits and some double digits ~ both can be equally bad/good, if that makes sense (lol). Check out a history of your CRP, rbc wbc, plattelettes, etc. You should see some type of pattern over time, with and without activity.

It is tough when you have more then one thing going on. What, i am trying to say, listen to your body, you know when something is not right. If you feel like something is 'off' you have to tell them it is bothering, hurting, causing difficulties, etc. You deserve to feel better. Your body is your temple, you live in it and with it.

What about bacterial overgrowth? Can you ask if you can take probiotics?

Hang in there.