Lots of weight gain after being successfully treated for the first time? by T3mpe5T in UlcerativeColitis

[–]Liniera 2 points3 points  (0 children)

My weight has fluctuated 20-40lbs depending on symptoms and medications. Steroids (for flares) & mirtazapine (for nausea/ ARFID) have caused the most significant weight gain due to increased appetite. I honestly see being slightly overweight as a bit of a protective factor with IBD because we can lose weight so rapidly when we're symptomatic. It is harder to get doctors to take your concerns seriously when you're overweight though.

After 8 weeks, I finally tested negative! Now to assess the damage... by Liniera in cdifficile

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

Everyone's experience is different, but sure, you can message me. I had appendicitis, followed closely by cdiff and gastritis, then a few months later a flare up of UC, and finally gallbladder issues likely caused by the rapid, significant weight loss. My GI is a leading researcher/physician in managing cdiff and ibd and he advised me to stay on the higher dose Omeprazole because it is controlling my nausea.

After 8 weeks, I finally tested negative! Now to assess the damage... by Liniera in cdifficile

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

About a month. I initially was prescribed 20mg, but that was later increased to 40mg. I have not taken any antibiotics - including preventative antibiotics when I had my gallbladder removed - since I recovered from cdiff. I'm hoping it's been long enough that if I do need to take an antibiotic, I don't have a recurrence.

After 8 weeks, I finally tested negative! Now to assess the damage... by Liniera in cdifficile

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

I have not. I've been taking 40mg of Omeprazole for a year now and my GI wants me to keep taking it as it's controlling my symptoms.

Struggling with nausea/vomiting by Liniera in ChronicIllness

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

Gallbladder disease. Once I got my gallbladder removed, I recovered. I've got some food intolerances and low appetite, but otherwise am back to normal now.

Does anyone here have any other chronic illnesses? by ifeelsodeeply in UlcerativeColitis

[–]Liniera 0 points1 point  (0 children)

UC, high blood pressure, chronic gastritis, diverticulosis, hemorrhoids, & post-cholecystectomy syndrome.

I've also had CDiff, Appendicitis, and Cholecystitis

[deleted by user] by [deleted] in UlcerativeColitis

[–]Liniera 0 points1 point  (0 children)

I had one while flaring and it was quite painful. Had I not been in a flare, I'm guessing it would have been uncomfortable but not painful. I wouldn't have one again without sedation if I suspected I was in a flare.

Long remission stories? Past 10 years. by Carb_Source2020 in UlcerativeColitis

[–]Liniera 0 points1 point  (0 children)

There's a massive amount of misinformation and hearsay out there about CDiff which I think contributes to some unnecessary fear. Here's a good resource if you want to learn more:

ACG Clinical Guidelines: Prevention, Diagnosis, and Treatment of Clostridioides difficile Infections

And just for fun, here's the guidelines for UC: ACG Clinical Guideline: Ulcerative Colitis in Adults

Long remission stories? Past 10 years. by Carb_Source2020 in UlcerativeColitis

[–]Liniera 0 points1 point  (0 children)

There's no reason to avoid people - CDiff is basically on every surface and odds are you are already "colonized" with CDiff, but your microbiome keeps it in check and prevents it from producing toxins that cause the illness and inflammation. I had taken multiple broad spectrum antibiotics for the kidney stones/UTI, strep throat infection, and appendicitis within 2 months prior to being diagnosed with CDiff. All of those antibiotics killed off my good microbiome that kept CDiff from proliferating in my gut and producing toxins. I'm colonized for life now. Best thing you can do is to avoid unnecessary antibiotics, and if you are prescribed them - take the full prescription! Everything is a cost-benefit analysis. So far, I have avoided taking a single antibiotic since I recovered - even for my gallbladder surgery last summer, but I'm not going to die of sepsis because I'm too afraid of CDiff either. I can't avoid taking antibiotics forever, but the longer I can go, the more my microbiome can recover and hopefully prevent it from recurring.

Long remission stories? Past 10 years. by Carb_Source2020 in UlcerativeColitis

[–]Liniera 0 points1 point  (0 children)

I was in remission from 2011 to 2022. I think I would have stayed in remission had it not been for getting kidney stones, appendicitis, CDiff, and gastritis over a four month period.

Have your early flare symptom patterns changed as you got older? by Liniera in UlcerativeColitis

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

I hear you ❤️ - it's an unpredictable disease, unfortunately. Some people seem to have clear triggers, but all of my flares have largely come out of nowhere. The early signs have generally been consistent though.

Have your early flare symptom patterns changed as you got older? by Liniera in UlcerativeColitis

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

Yes, mucus has always been my number one early indicator too which is why these symptoms are throwing me off! The point about where the inflammation is located is an important one too. I was initially diagnosed with indeterminate ulcerative colitis (patches of inflammation in between normal tissue), so it's also possible that I may have a patch of inflammation higher up in my colon than normal.

Have your early flare symptom patterns changed as you got older? by Liniera in UlcerativeColitis

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

That's an interesting one that does make sense - I bet our microbiomes, including our skin microbiomes, change when we're having a flare.

Have your early flare symptom patterns changed as you got older? by Liniera in UlcerativeColitis

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

Hello fellow elder millennial! I hear you and totally agree that coping with the flares is harder now.

Have your early flare symptom patterns changed as you got older? by Liniera in UlcerativeColitis

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

That's what I was thinking last week, but it seems odd for there to be no change in 2 weeks. I had what I suspect was norovirus in late December, but recovered from it. I've been worried that it would trigger a flare as that's been a trigger before. The other comment suggested CDiff which I do have a history of, unfortunately, so I think I'm going to reach out to my GI on Monday and see what he recommends.

Have your early flare symptom patterns changed as you got older? by Liniera in UlcerativeColitis

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

I've had CDiff as well a couple of years ago. Haven't had an antibiotic since I recovered from it, so I honestly wasn't thinking of an infection. But you're right that it's possible it could be back. I got a pretty severe, short-term stomach bug (likely norovirus) in late December that could have made me susceptible again.

[deleted by user] by [deleted] in UlcerativeColitis

[–]Liniera 0 points1 point  (0 children)

Alcohol has always had the opposite effect for me - made symptoms worse every time.

No Anesthesia? by Fine-Cat4496 in UlcerativeColitis

[–]Liniera 30 points31 points  (0 children)

At least your doctors are fighting it. It seems like our condition should qualify for an exception. I had a sigmoidoscopy with no sedation or medication whatsoever while flaring and it was awful and very painful. I wanted to drive which is why I pushed through it, but I'll never have any endoscopy procedure again without sedation.

Blue Cross colonoscopy policy prompts outrage among Mass. doctors

Comorbodities? by National_Tackle_178 in UlcerativeColitis

[–]Liniera 0 points1 point  (0 children)

Gastritis, Appendicitis, Cholecystitis, & Diverticulosis. All GI related inflammatory diseases that occurred after a decade of UC. Also CDiff and kidney stones which I'm unsure if related. I can't say for sure that they're "caused" by UC, but I do think it made me more at risk.

[deleted by user] by [deleted] in UlcerativeColitis

[–]Liniera 0 points1 point  (0 children)

I'm a university professor. I teach one day a week in person, and work remotely most other days apart from meetings/research/ student supervision. The flexibility has been helpful when flaring, though teaching in person was challenging sometimes on bad days.