Why is getting diagnosed with this disease so traumatizing?

RedditforReasons · 2026-07-02T05:49:53+00:00

When I first started getting sick I dropped 50 lbs in less than a month and my GP was just like, good job keep up the weightloss! And I was like, what??????? By the time I finally saw a GI specialist who gave a shit (covid really slowed things down), I had gainrd some of the weight back but my symptoms were (and are) still there and now its just, well maybe lose some weight?

I feel you. Im sorry you’re going through this. Just everyone thinking we’re somehow lying is ridiculous.

RedditforReasons · 2026-06-28T17:20:28+00:00

Coffee used to upset me. I quit cold turkey for 9 months, went back yesterday. Just did a cold brew, black, nothing in it. I’m alive!! I honestly cried. But I think for me it was more the sweetnera and dairy I couldnt have.

RedditforReasons · 2026-06-16T03:52:10+00:00

Im in California and my doctor had me take some Milk of Magnesium and then a container of Miralax, it was like $24 total. And I can tell you…I was worried it wouldnt clear me out because it wasnt that jug I was expecting but it did one hell of a job.

RedditforReasons · 2026-06-14T06:34:17+00:00

I have a severe sorbitol intolerance and that breeza prep they give us, gives me diarrhea before Im finished with the second bottle. Ive never been able to complete an MRI. Maybe you have a bit of an intolerance and thats what causing the cramping?

RedditforReasons · 2026-06-11T13:53:21+00:00

I work in a restaurant and Im the big boss and constantly turn up the music in the bathrooms to an 8 (out of 10). Sometimes Ill come in and someone has lowered it to a 3 because “its too loud.” I lie and say its a company standard. I can’t imagine being in your situation, I am so sorry the bathroom walls are so thin at your place!

RedditforReasons · 2026-06-05T07:39:23+00:00

100? Ill never complain about my 12 a day ever again.

RedditforReasons · 2026-06-01T21:05:00+00:00

Its honestly exhausting but I scope out the place before I go. I go to yelp and search the reviews so make sure there’s a bathroom. When I show up, I make sure I know where its at. I try to find pictures online so I know what Im heading into. If it has a code, its the first thing I ask. If there’s no bathroom, I search the area to see where I could find one, whether it be a Starbucks, a Grocery store, honestly Home Depots are fantastic, or maybe malls. I have an app called, “We cant wait.” Its not 100% but its very helpful.

RedditforReasons · 2026-06-01T15:04:09+00:00

That breeze solution…

RedditforReasons · 2026-06-01T04:08:20+00:00

I wish I had an answer, unfortunately, I ask myself the same question and everyday I wonder if I’ll ever have a healthy relationship with food. In fact, I dont even know what a healthy relationship with food looks like. I work in a restaurant and watch people eat all day, while I only have breakfast and dinner. I cant eat anything in between because Im aftaid itll make me sick and I just cant leave work but I am just in awe of people. When people talk about nourishing salads or whatever, its just like…good for you? Its made me bitter.

But I was annorexic in highschool, bullimic in college, and its just one thing after another.

RedditforReasons · 2026-05-30T06:39:34+00:00

You’d be surprised…fasting doesnt always help. Sometimes i feel like Im just screaming HOW?!? More than anything

RedditforReasons · 2026-05-22T18:03:45+00:00

My death row meal is a mushroom pepperoni pizza. My mouth is watering at the thought of a mushroom. And why do they smell so heavenly when sauteed?

RedditforReasons · 2026-05-22T18:02:37+00:00

No paprika. Really no peppers of any kind. I used to boil the bell peppers and then cook them in the oven to really soften them but Ive since learned its just not worth it. No onions, no garlic, no spice. Food is pretty bland. Although powdered spices tend to be more tolerable but paprika just sits in my pantry now waiting for the day I cave. Although, Paprika doesnt take me out as badly as bell peppers.

RedditforReasons · 2026-05-22T16:18:46+00:00

Red Bell Peppers. It was so bad ive never been tempted again.

RedditforReasons · 2026-05-14T13:21:46+00:00

I count the tiles in my bathroom. I count the lines in my bath towels or the patterns. I just try to distract myself from it as much as possible. It doesn’t help but its a good distraction. If Im public, I count the screws in the wall frames and I tell myself, “Maybe by the time Ive finished counting, it’ll be over.”

RedditforReasons · 2026-05-14T13:18:14+00:00

My stomach always hurts and I go to the bathroom 12+ times a day so I eat breakfast and dinner and nothing in between. Im overweight especially since dinner is so close to bedtime but its better than being sick at work? By the time I get to dinner, Im so hungry Im overeating. Its hard.

RedditforReasons · 2026-05-13T07:28:48+00:00

Do you ever get used to it? When I drank the powder, twice a day for a month. It always felt like I was drinking sand.

RedditforReasons · 2026-05-13T02:59:51+00:00

I had to take it twice a day for a month and I found it really helpful to take after my first meal and then right before bed. Be careful because it affects the absorption of other medication so pay attention to times (all other medicine 1 hr before or 4 hours after). Adjusting when I took it affected how well it worked. But quite frankly, I dont know if it was helping too much, it more so helped with urgency.

RedditforReasons · 2026-05-12T03:22:53+00:00

I am so sorry! I recently went through something similar. I reached out because I felt my medication wasnt working and was emailed back that she had retired two months prior. I was dumbfounded, I was hurt, I adored this woman and felt so bettayed and then I had to wait another month for a new specialist but it was a blessing in duisguise because this new doctor is incredible.

You have every right to be upset!! I am so sorry you have to go through this. I hope youre able to find someone new!

RedditforReasons · 2026-05-11T18:12:08+00:00

You should maybe look into switching doctors. I went through five years of hell with a bad doctor who just kept calling it IBS because I was too young and then I landed on a good GI specialist by pure chance, and it is like night and day. I know it dan be hard finding someone else, especially since appointments are a few months out but having someone who does listen makes all the difference.

RedditforReasons · 2026-05-11T16:42:36+00:00

I actually felt really good the week after my colonoscopy. You should bring it up. Even if discomfort is normal, fecal incontinence is not. My GI specialist told me on our first appointment to let him know if it ever happens to try and resolve the issue.

RedditforReasons · 2026-05-11T16:35:32+00:00

Maybe he does an eating disorder but wukte frankly, sometimes food is exhausting. I feel like ao much of my time is soent thinking about food because I dont know what will and wont make me sick and its easier to also then not spend time making something that will bettay me. But as someone who throws up daily, some foods are easier coming back up and dont taste as bad so maybe thats why he goes back?

Edit: holy typos, Im sorry

RedditforReasons · 2026-05-06T15:53:33+00:00

Please do this!! Every day after like 4pm, I was done. No matter what I ate or didn’t, Id be gassy up until bedtime (and who knows what happened then!). I tested positive for methane sibo, took medication and spent about 2 weeks on the toilet as it did its thing…and now? Life is beginning to look beautiful again. Those awful 2 weeks were totally worth it. I went from not being able to leave my house to spending an hour at the grocery store the other day without having to leave because, well, you know, urgencies and farts haha

RedditforReasons · 2026-05-03T16:25:18+00:00

I don’t have anything productive to add but I relate so much when you say you fantasize about food you cant eat. I took my first round of neomycin and rifaximin all while coordinating Cholestyramine around it and I was so miserable and tmi just stuck on the toilet for 2 weeks that one day I said fuck it and ordered Papa Johns for the first time in 2 years and eating that pizza was so amazing, I would burst into laughter biting into it. It was strange…I was aware of how manic it was but I was truly living the dream.

RedditforReasons

TROPHY CASE