u/Junior_Wear_6875

Hey all. I started creon a couple months ago. At first I thought it was a miracle. If felt so great. No more diarrhea, oily stools, less bloating. Even my chronic pain was better. For all of like 2 weeks. I am not having diarreah anymo4e but have been having oily stools even after they upped my dosage. I now take 3 36000 creon capsules with each mean and 2 with snack. I still don't have diarr3ah but my poops are quite soft and do have some oil on top and im bloated all the time again. I don't eat high fat. The fatigue is back. At my follow up she suggested a fodmap elimination diet but I just don't know if that's a good idea for me since I have a history of restrictive eating disorder.

Anyone have experience with creon no longer working? I feel like my gi doctor is nice but she doesn't have a lot of answers for me. Idk what to ask for in the next appt since I feel like I'm already on a pretty damn high dose of creon.

My MRI for my back finally got approved after almost a year of fighting. But I have long term pain in my hips too. I guess the hip part got denied. And I specifically asked to make sure they say to look for inflammation but the only thing noted in the order is mri of the lumbar spine. Now in worried I'm wasting my time and money. Is thisnrven sufficient to see inflammation if their aren't structural changes? What kind of mri did you all receive? The internet talks about stir imaging but idk what that is or if it's truly necessary.

Can others here who experience periods confirm that you experience this? I'm in diagnostic limbo and am questioning whether I really should see a rheumatologist or just bite the bullet and get a lap for endo bc whatever is going on is one or the other or both. I'm scared that if I tell a rheumatologist that it's worse near my period they'll write me off and assume it's a gyno issue. And I'm not sure if that's correct. I mean it makes sense to me that as my hormones change around my cycle, inflammatory conditions would worsen but idk, the medical system is so fractured.

It's now been two weeks since I've been regularly taking creon. I still have other health issues to figure out but even my chronic back and pelvic pain is lessened I'm assuming bc I'm actually absorbing the nutrients in the food i eat, lowering overall inflammation. Running is easier. Working is easier. 2 ppl have noted how I sound and seem more like myself. I feel like a different person. For a while there, all the doc appointments and new diagnosis felt like too much. I was a zombie. Working full time felt like pulling teeth. Now that I'm nourished, I feel like I can do anything. Take the creon friends. I haven't felt this good in possibly years. Idk if my pancreas has just very slowly been declining or what but i hope this is truely my new baseline and not some weird fluke of a good week or two.

It's just such a shit choice. Do I continue to suffer as is which is frustrating but at least familiar? Or do I go in for a surgery and run all the risks including potentially making things worse?

How are we supposed to choose?

How did you choose?

I'm not bedridden like many ppl are. I'm just so tired of being in pain every damn day. Of being scared of flres when everything ramps up and I feel helpless.

But I'm also scared that the surgery that's supposed to diagnose and help me will lead to complications or make the daily pain even worse.

The gyno I've been seeing is pretty good. But how do I know she's not ready for surgery bc that's how she makes the big bucks. She's the first dr I've ever seen that I actually felt safe with but who knows if that's a false sense of safety.

Not currently diagnosed. Always had some kind of back pain. Worsening in past couple yrs. Really think I might have both endometriosis and AS but unclear ATM. The pain ranges from a 5 on good days to an 8-10 on bad days. It's gotten so bad I couldn't walk well for a few weeks. Gotten so had I fainted. Just.had a semi major flare where I was just at a constant 8 no matter how much stretching and rolling I did. Yesterday i tried to do some cooking in the morning and tried standing and shelling edamame for all of 10 minutes b4 I had to take a break bc the pain was so great. Then I cried bc it's so overwhelming to feel like I can't do simple tasks and navigating the medical system essentially on my.own. literally 6 hrs after that I ran 14 miles. At about a 13min pace on a treadmill.mind you but still. Days like those.make me question my sanity. How could a simple task feel like I'm on fire and in the very same day I run 14.miles. my pain was right back to that level 8 when I finished running but sometimes it feels like running is the only pain relief I get. I guess I just wanted to see if anyone else has similar experiences? I know AS is worse with rest and better with movement but this example is so.stark it makes me feel like I'm going crazy. I also truly enjoy running as a form of meditation so it doesn't take much to motivate me to do it. Sometimes the pain makes me not want to start but once I do it's like I actually forget about my back for the time that I'm running.

Tldr; anyone struggle with simple static movements like standing or sitting greatly.but then can still seem to do long distance running or some.form.of intense exercise?

I had some "signs" of endo on us. None really on mri. Bc somewhat helps manage pain. But my most disruptive symptoms is back pain and fatigue. Recently diagnosed w gastritis and EPI. The daily pelvic pain sucks too but just.isnt as bad as the back. Obgyn is very kind and is willing to do surgery but I'm very scared of surgery. Of the cost. Of the risks. Of finding nothing. Of it making things worse. I've done many hrs of research and have found that I most likely have either or both endo or early ankylosing spondylitis. I've had back pain for over 6 yrs that slowly gets worse. The daily pelvic pain didn't start til the past couple yrs. I want to hear other stories of ppl ruling things out before surgery. How long did it take? When did u feel.ready? Did your obgyn/specialist drop you? Please don't tell.me to see a specialist instead. The woman I'm seeing is the best I'm going to get where I am and idk if I want to fly thousands of miles for someo3n more of an endo specialist when all we have is an unofficial list of them..