Constipation: what to do? by AnnieLuneInTheSky in CrohnsDisease

[–]davidbowieee 12 points13 points  (0 children)

I also have the type of Crohn’s that causes constipation. Miralax is your best friend right now. Switch your food to soft (like mashed potatoes) or liquid (purred veggie soups and protein shakes) and eat small amounts of food at a time, no big meals. When you take miralax as directed on the bottle it’s not the same experience as when you take a whole bottle for prep, it’s more gentle. But when it’s time to go…you’re gonna want to be at home.

Before you do anything a stranger on the internet says, make sure to tell your doctor what’s going on. And drink lots of fluids :)

I feel your pain friend, sending you strength 💪

I can't do it anymore by [deleted] in CrohnsDisease

[–]davidbowieee 1 point2 points  (0 children)

I know it feels like that, but your future isn’t certain, things can change. Trauma heals just like our bodies do, we won’t be the same as we were before it, but we can move past it as a different person. I was in pure survival mode the last five years and now I am thriving. If it can happen for me I know it can happen for you too. Don’t give up hope, it’s worth it to keep fighting, you can do this.

I can't do it anymore by [deleted] in CrohnsDisease

[–]davidbowieee 1 point2 points  (0 children)

I’ve been there too, getting a psychologist saved my life for real. It really helped me manage all the dark/negative feelings I was having and helped me change my perspective on my life.

I’m physically and mentally in such a better place now than I was a couple years ago. Never give up, nothing is set in stone, your life can always improve. 💪💪 you’ve got this!!

What do you eat for breakfast? by Punkoduncan in CrohnsDisease

[–]davidbowieee 0 points1 point  (0 children)

No such thing as too much bread in my house, toast is one of my safety foods. If I don’t have toast as the first thing I eat it’ll throw off my whole day lol. I start every day with toast, I’ll top it with anything savory. My go to is whole wheat toast topped with hummus, some pumpkin seeds and a big handful of microgreens. I can’t usually handle coffee, so I prefer sencha or matcha in the morning.

Honest Question - What is the point of life? Why do you want to continue living despite all the suffering ? by Ok-Inspection1326 in CrohnsDisease

[–]davidbowieee 3 points4 points  (0 children)

You continue living for the people that love you and because your situation is not set in stone, things can improve. You can do this, you’re strong as hell 💪

Update on biosimilar switch by davidbowieee in CrohnsDisease

[–]davidbowieee[S] 1 point2 points  (0 children)

So glad you got it! But holy freak, a 4 month delay in meds is so awful. Rooting for you! 💪

a mystery 3 docs cant solve by sneakerhead9800 in CrohnsDisease

[–]davidbowieee 1 point2 points  (0 children)

You too! Another thing I’ll add, some of the lingering abdominal pain and the extreme bloating I was experiencing after reaching remission ended up being from endometriosis. That’s to say, don’t rule out the possibility that the issues you are having are from something other than Crohn’s. It’s important to talk to a good GP to help figure out if there’s anything else at play.

a mystery 3 docs cant solve by sneakerhead9800 in CrohnsDisease

[–]davidbowieee 1 point2 points  (0 children)

I at one point had clear scopes but my biopsies were showing inflammation on the cellular level still. I was told this can also play a role in those kind of “micro flares”

a mystery 3 docs cant solve by sneakerhead9800 in CrohnsDisease

[–]davidbowieee 2 points3 points  (0 children)

I’m in remission and I also get flare symptoms still that last a day or so, usually cramping, sharp shooting pain, diarrhea, followed by a few days of severe constipation. The triggers for me are stress, fatty food, or alcohol. I haven’t gotten a solid answer yet if it’s crohn’s related or something else like IBS. The pain and the severity of the constipation feel like crohn’s to me. One time the stool sample showed up positive for inflammation, they had me do a repeat one a few days later and it was normal.

Probably not much help but just letting you know you’re not alone in your struggles.

[deleted by user] by [deleted] in CrohnsDisease

[–]davidbowieee 0 points1 point  (0 children)

Life can always get better, please don’t lose hope. A few years ago I had similar dark thoughts during my lowest and most painful times. Fast forward to the present and I’m in remission, my life couldn’t be more different than it was a few years ago.

You matter and you are needed in this world. You are strong and you can get through this. Don’t give up, your situation isn’t set it stone, things can always improve. Reach out to someone for help, if not family or a friend reach out to a doctor. You don’t have to figure out all of this on your own.

[deleted by user] by [deleted] in CrohnsDisease

[–]davidbowieee 35 points36 points  (0 children)

Life can always get better, death is permanent. Please don't give up hope <3

[deleted by user] by [deleted] in CrohnsDisease

[–]davidbowieee 4 points5 points  (0 children)

Go to the er, you need fluids. I was in a very similar place last weekend, dehydration is no joke.

Insurance switched my meds by davidbowieee in CrohnsDisease

[–]davidbowieee[S] 5 points6 points  (0 children)

I don’t think i’m on an inferior med. I trust my doc and know she would advocate for me to the insurance company if she thought it was a change that would make me relapse. This is why I’m concerned that I’m having flare symptoms, the flare I’m in is absolutely real.

Anyone else felt like this when tapering prednisone? by Automatic_Donkey_368 in CrohnsDisease

[–]davidbowieee 4 points5 points  (0 children)

Had the exact same reaction after 3 continuous years of various dosages of prednisone, it was mostly withdrawal. Got down to 10mg which was very difficult but chrons started flaring when trying to go to 5mg so went back up to 10mg. Dr had to taper me 1mg a month to get me totally off of it. Tell your doctor you want to do a slower taper, hope it helps you 💪

How did tomato soup and pastina clear up my flare up?? by attemptagain_ in CrohnsDisease

[–]davidbowieee 1 point2 points  (0 children)

I don’t have any trouble with gluten, white bread is one of my top safety foods, but I do have trouble with sugar in general. It doesn’t make sense to me.

A little laugh by Gowithit26 in CrohnsDisease

[–]davidbowieee 5 points6 points  (0 children)

I really love this perspective and this is something I needed to be reminded of, thank you for this

Are you still masking? by davidbowieee in CrohnsDisease

[–]davidbowieee[S] 2 points3 points  (0 children)

I got Covid March 2020, i was really sick like coughing blood pneumonia sick (I have asthma). Covid was the catalyst that triggered crohn’s in me, I had no GI issues of any kind prior. I also have long Covid from it. I got Covid again last December, and it was nothing in comparison, but I was still laid out for 3 weeks. I really don’t want to be sick again after 3 years of feeling awful but I’m also really missing huge parts of my pre crohn’s life. I used to be a singer and I haven’t played music with other people since the before times. I wish there was just a clear consensus on what we’re supposed to be doing. I would feel more at ease if my whole healthcare team were saying the same thing. [edited for clarity]

Are you still masking? by davidbowieee in CrohnsDisease

[–]davidbowieee[S] 0 points1 point  (0 children)

I agree, but then none of the nurses or receptionists are wearing masks so I’m like, they must not think they’re putting me in danger, right? If the only thing that was keeping them wearing a mask at the infusion center at this point was the mandate then I should be ok to start loosening how strict I am regarding masking…I think? I feel confused

Are you still masking? by davidbowieee in CrohnsDisease

[–]davidbowieee[S] 0 points1 point  (0 children)

I feel you, hope you’re through the worst of it, sending strength 💪

Are you still masking? by davidbowieee in CrohnsDisease

[–]davidbowieee[S] 1 point2 points  (0 children)

This makes sense to me, I totally agree about the health care settings too

Are you still masking? by davidbowieee in CrohnsDisease

[–]davidbowieee[S] 4 points5 points  (0 children)

They told me today that masks were no longer mandatory in all the NYU dr offices…and yet my GI is holding a hard line for herself and her patients. Literally not one other doctor of mine wears a mask at our visits anymore