New to this...symptoms and suffering

[ThatsmyThrone]

So, I’m new to this, diagnosed over zoom thanks to Covid and honestly haven’t received the best medical care. I’ve been sick since March. Lost 50 lbs, couldn’t eat, severe diarrhea (8 - 10 times a day), when I did eat I would get a lot of pain in my upper abdomen and my lower right side and just overall general stomach pain like I was punched in the gut. I had a pill endoscopy and had “small ulcers in my small intestine”. Was told it wasn’t Crohns at first over email. Then a month later was told it was. On Budesidone now. However, since being on this medicine I feel like I have gotten worse. My pill endoscopy was over 2 months ago...I now have extreme headaches, I have to sleep at a 45 degree angle because I get such bad acid reflux, I only sleep about 3 hours a night because of pain and burning, I get severe chest pain and burning, I feel like there is something stuck in my chest at times, I am vomiting liquid in the mornings, I gag a lot, I have severe pain and pressure on my diaphragm area, I get extreme stomach pain that is all over and unrelenting, I still have sharp right side pain, I am constipated now (no more diarrhea), I have a horrible taste in the back of my throat, I’ve had moth sores constantly, there are times I have to stop eating or drinking warm liquids because I can feel them burning my esophagus on the way down...I have emailed and talked to my GI. He is telling me this is GERD, separate and distinct from my Crohns and I just need to get on a Proton Pump Inhibitor, which my insurance keeps denying.

Does this make sense to you? I feel like there is more going on and I’m not being treated appropriately. I am in severe pain constantly. I can’t sleep.Before Covid my GI was very responsive and on top of things when I saw him in person, now I feel like as a zoom dr he just doesn’t care and isn’t taking my case seriously. I can’t keep living like this.

 

[lukesjr]

are you taking any supplements, any diet modifications?

 

[ThatsmyThrone]

are you taking any supplements, any diet modifications?

I typically eat one meal a day. And it is bland food. I don’t take any supplements or anything. My dr hasn’t made any suggestions other than over the counter omeprazole, the Budesidone, and I take Welchol to aid in GI issues (been on this medicine for years as I’ve always had stomach issues).

 

[lukesjr]

First no matter what you hear on the forum, always follow your dr's advice. That said, you can pull a lot of good info from the forum and compliment your dr's recommendation.

I think apple cider vinegar pills have helped me along with a host of other things, turmeric, cinnamon, olive leaf extract, vitamin D with K2, magnesium, erc. I start my morning, every morning, with water and L glutamine powder on an empty stomach. I put 5 grams of powder in water. It has no taste so its no problem to drink. Read up on some supplements there are some that really help and studies have showed are as effective as medication. Off the top of my head I cant remember which ones I have read that helped the most. I have a friend that swears magnesium changed his life, I take all that type of talk with some skepticism.

Rather than 1 meal a day you should focus on eating specific foods. Do a quick read on Low fodmap or SCD. Both of those diets are backed by science. Combine a proven diet with intermittent fasting and drink a lot of water. Don't give up!

 

[ThatsmyThrone]

Thanks for the advice. My dr hasn’t been much help. I am doing research to look for a new one. Problem is, thanks to Covid, doctors are weeks and weeks out on appointments, even if they are seeing people in person. This seems like a bad time for an initial diagnosis of this.

 

[lukesjr]

I think Dr's are very limited by all the regulations in place and the liability they have. They are pretty much forced to follow a certain path of diagnosis based on rules and regulations and medical guidelines which I think is why it takes so long and so many of us have trouble getting help. So, I don't blame the Dr's, I blame a society where we can't say that an orange cures scurvy because only drugs can cure! But I digress. I think most people get really good results when they take a holistic view, meaning they combine medicine with lifestyle changes and proper supplementation.

If you want a simple plan here it is. Use intermittent fasting (either 18/6 or 16/8), drink bone broth on an empty stomach maybe right before your first meal, drink 5 grams of l glutamine on an empty stomach maybe when you wake up. See what that does for you for a week. Both of those do zero harm.

 

[ahm]

Hi, I hope you're getting better. when i first get diagnosed with crohn's I was in similar situation severe weight loss, couldn't eat more about 200 cal with similar diarrhea. my doctor put me on course of steroids which helped alot with all of these symptoms, but the steroids do not cure the inflammation or keep it under control, they are used as temporary measure in difficult times. Please ask your doctor about them, he might consider them for you.

personal advice from someone who has crohn's for 12 years now: please do not act on your own, controlling crohn's disease is not easy task but if you are not comfortable with your doctor, you always have the choice to go to another one.

 

[Tony_G]

I got my crohn’s under control once I started eating more, but I know how hard it is to eat. I achieved remission when I added boost to my diet. Maybe ask your GI about drinking Boost or ensure, even over the phone if possible without a formal appointment.

 

[junae 11]

So, I’m new to this, diagnosed over zoom thanks to Covid and honestly haven’t received the best medical care. I’ve been sick since March. Lost 50 lbs, couldn’t eat, severe diarrhea (8 - 10 times a day), when I did eat I would get a lot of pain in my upper abdomen and my lower right side and just overall general stomach pain like I was punched in the gut. I had a pill endoscopy and had “small ulcers in my small intestine”. Was told it wasn’t Crohns at first over email. Then a month later was told it was. On Budesidone now. However, since being on this medicine I feel like I have gotten worse. My pill endoscopy was over 2 months ago...I now have extreme headaches, I have to sleep at a 45 degree angle because I get such bad acid reflux, I only sleep about 3 hours a night because of pain and burning, I get severe chest pain and burning, I feel like there is something stuck in my chest at times, I am vomiting liquid in the mornings, I gag a lot, I have severe pain and pressure on my diaphragm area, I get extreme stomach pain that is all over and unrelenting, I still have sharp right side pain, I am constipated now (no more diarrhea), I have a horrible taste in the back of my throat, I’ve had moth sores constantly, there are times I have to stop eating or drinking warm liquids because I can feel them burning my esophagus on the way down...I have emailed and talked to my GI. He is telling me this is GERD, separate and distinct from my Crohns and I just need to get on a Proton Pump Inhibitor, which my insurance keeps denying.

Does this make sense to you? I feel like there is more going on and I’m not being treated appropriately. I am in severe pain constantly. I can’t sleep.Before Covid my GI was very responsive and on top of things when I saw him in person, now I feel like as a zoom dr he just doesn’t care and isn’t taking my case seriously. I can’t keep living like this.

You need to find a Gastroligest , you are where Im at now [again] you need help with this, you may need a operation ,but, DONT be afraid of that if it comes to it, good doctors and meds , you will feel REBORN after a operation, brand new start[ what I call it] I really hope you get better I know this is scary ,but, trust me things WILL get better, as long as you see the dotors dont let up if dont listen to you, the more you bug them the more they will look into helping you in different ways to try [meds,,surgery].. Good luck.. P.S. it took NAVY doctors ,,,me in the hospitol for 5 months test after test before they found I have crohns, [1987] so just be patiant you will get better,,,, believe it or not.. I never thought I would, but, we do for a while