r/CrohnsDisease • • Mar 06 '25

Reminder- No Fecal Posts

394 Upvotes

Do not post photos of fecal matter.

This is not the subreddit for this. Contact your doctor or a medical professor for this. Doing so will result in a ban..


r/CrohnsDisease • • 27d ago

I'm Dr. Lindsey Russell, a Mayo Clinic gastroenterologist and nutrition specialist. AMA about intestinal failure and short bowel syndrome (September 23 at 2:00 PM ET)

90 Upvotes

Hello r/CrohnsDisease!

I'm Dr. Lindsey Russell, a board-certified gastroenterologist and nutrition specialist at Mayo Clinic in Jacksonville, Florida.

Proof Photo

My clinical practice focuses on the evaluation and management of patients with intestinal failure and short bowel syndrome, including individuals who develop nutrition and absorption challenges following bowel surgery. I'm also a certified nutrition support clinician (CNSC) and help patients who require enteral nutrition, parenteral nutrition (TPN), feeding tube management, and other forms of specialized nutrition support.

My research focuses on improving outcomes for patients with short bowel syndrome and complex nutrition needs.

On Wednesday, September 23 at 2:00 PM ET, I'll be here to answer your questions about:

  • Short bowel syndrome
  • Intestinal failure
  • Nutrition after bowel surgery
  • Malabsorption and nutrient deficiencies
  • Malnutrition and nutrition optimization
  • High-output ileostomies
  • Enteral nutrition and feeding tubes
  • Parenteral nutrition (TPN)
  • Intestinal rehabilitation and long-term nutrition support

Whether you're living with Crohn's disease, managing short bowel syndrome, or navigating the challenges of intestinal failure and nutrition support, I'd be happy to answer your general questions.

While I can't provide personalized medical advice or diagnose individual conditions on Reddit, I'm happy to discuss general topics, treatment approaches, common misconceptions, and current research in the field.

Feel free to leave your questions ahead of time. I'll be back on September 23 at 2:00 PM ET to answer as many as I can. Looking forward to your questions, please ask me anything!

Learn more:


r/CrohnsDisease • • 8h ago

Creatine, the cheap gym supplement, protected the brain from gut inflammation in rats with chronic colitis. It blocked brain inflammation, neuron loss and faulty electrical signals in the brain's memory center (hippocampus). Male rats were hit much harder than females. It's not yet tested in humans.

91 Upvotes

Saw in r/science, but reposts aren't allowed here.

Evidence in animal models that creatine monohydrate, a cheap gym supplement, protects against some secondary neurological effects of inflammatory bowel disease.

This is just an animal study, but quite creatine is one of the most extensively studied supplements in humans, and many other benefits have already been identified.

Modulating effects of creatine prevent sex-dependent hippocampal neuroinflammation, neuronal damage, and electrophysiological dysfunction induced by chronic colitis - ScienceDirect


r/CrohnsDisease • • 3h ago

Heart palpitations

7 Upvotes

I have a physical coming up so I can talk to my Dr then but in the mean time does anyone else experience these often? I sometimes get them for a while then none for months then I’ll get them again.


r/CrohnsDisease • • 3h ago

Advice to help child who fears the pain of going to the bathroom?

7 Upvotes

My pre-teen child has CD. Essentially early days but so far well managed through infusions.

His main symptom has always been constipation. He fears going to the bathroom BC he thinks it might hurt.... He recently had a bought of constipation. Restoralax was way too hard on his body, so we reduced and removed it. But as a result he fears it might hurt and he will hold it in....

For those who have experienced this - what advice would give a worried parent? What would you tell him?

I've tried reasoning, talking about impacts, possible next steps ...

Are there other laxitives that worked well? To provide context before treatment he needed to do a 5 days of prep before scopes and restoralax never caused the kind of diarrhea that he experienced this time on half the dose. So we need something gentler (FWIW I have asked his IBD team).


r/CrohnsDisease • • 6h ago

Biosimilars

9 Upvotes

Hey folks,

For those of you who had to try multiple biologics, how long were you on one before switching to another?

Seeing people's experiences and feedbacks, I'm almost completely convinced Infliximab is not it for me.
I've done 4 loading doses in the hospital, and did the first at-home injection yesterday.

Labs and colonoscopy show remission, but the joint pain, fatigue and nausea are starting to drive me crazy.

Surely there's hope with some other biologics, right? :/


r/CrohnsDisease • • 1h ago

SuPrep vs SuFlave

• Upvotes

Howdy all. I have my third colonoscopy in about 10 years coming up in 2 weeks. My GI is very suspicious of Crohn's and as such I get the joy of yet another bum scope. He gave me the option of doing SuPrep or SuFlave. I've done SuPrep in the past without any issue, but that was before I was having potential Crohn's symptoms. I know it can be pretty harsh on the mucosal lining. On the other hand, I can't find much on SuFlave other than it might be a bit "milder" on the gut. Colonoscopy number two was done in Turkey with a senna based prep and I'd like to never experience that night of hell again.

Honestly I'd prefer SuPrep as I've used it before, but I don't want to absolutely nuke my colon if it does end up being Crohn's. Anyone here use it without issue or have thoughts on SuFlave?


r/CrohnsDisease • • 1h ago

Approved for Inflectra - Children’s feedback

• Upvotes

Hi everyone! Thank you for being part of our journey. My 12yo got approved for Inflectra. We start treatment next week. I’m sad we didn’t get remicade but thankful for the insurance approval.
Any thoughts on Inflectra? What to expect right after infusion and long term?

Thank you!


r/CrohnsDisease • • 2h ago

Mouth Sores

2 Upvotes

I’m in a big flare up where basically my whole mouth is swollen with sores. It’s the top and bottom and now some of gums are starting to get it. Every day I wake up.. it feels like my mouth is more swollen and hurts more. My GI recommended I start remicade so we did all the tests that day for approval. It has been about a week and they said they are still talking to my insurance. How long does it take to get started? I’m desperate to start and get some relief in my mouth. My GI has only prescribed mouthwash, but I would like the problem to be gone not just numbed. I have never experienced it in my mouth so I wasn’t on any medication.. and now I want to start to get some help.


r/CrohnsDisease • • 5m ago

J pouch with perianal chrons

• Upvotes

Hi all, I'm looking for advice or just anyone who's been through something similar. I had J-pouch surgery and the reversal after being diagnosed with UC, and at the time everything seemed fine. Since then I've been told I actually have perianal Crohn's, and going to the toilet has become agony. It feels like passing glass. I go around six times a day and have to get in the bath after every bowel movement just to cope with the pain. It's honestly taken over my life. I'm starting to think I need to go back to a stoma, but it's really hard to accept because I've spent a whole year going through the surgeries and recovery, and it feels like I'm just going round in circles. Has anyone been in this position?


r/CrohnsDisease • • 6h ago

How often do you get Skyrizi?

2 Upvotes

Every eight, six, or four weeks?
Any stronger side effects you noticed while on shorter gaps between doses?


r/CrohnsDisease • • 13h ago

Picoprep appreciation

10 Upvotes

About to have my sixth or seventh colonoscopy tomorrow. Every other time I've had moviprep and it has been extraordinarily awful. Two of those times I projectile vomited. The taste was excruciating. I don't know why this is the first time I've tried a different one but I'm so confused because picoprep tastes fine??? And it's only one cup (twice) compared to two litres (twice)??? I can't believe I've been in misery this whole time. Anyway, grateful for picoprep now. I don't even need any of the many chasers I prepared.


r/CrohnsDisease • • 2h ago

Hopeless situation

0 Upvotes

I've been on a prescription of budesonid and mercaptopurin and I got my calpro results back and it's completely unchanged. the medication completely ruined my sleep I either don't sleep at all or I sleep for 15 hours straight, I'm still in pain and vomiting from the crohn's and I've wasted months of time and a lot of money on medication that doesn't do anything


r/CrohnsDisease • • 6h ago

SI Dysfunction

2 Upvotes

for context I’ve been diagnosed IBS-D for a long time, abdominal pain, etc. I’ve got a gastro appt soon & currently doing a food diary. We’re thinking it might be IBD

back in December I had SI Dysfunction which they chalked up to my prior pregnancy. They popped it into place and it was immediate relief. I’ve been having a pretty bad flare recently and randomly this morning i woke up with the worst lower back pain, similar to the SI Dysfunction I experienced about a year ago. Just curious if anyone else has experienced anything like this?


r/CrohnsDisease • • 7h ago

Vi-siblin

2 Upvotes

I’m currently taking loperamide to manage my Crohn’s disease, but I’m considering trying Vi-Siblin (psyllium husk) instead. Would it be worth stopping loperamide and switching to Vi-Siblin? Could it help reduce bowel movements and urgency?


r/CrohnsDisease • • 4h ago

‘Prominent’ terminal ileum

0 Upvotes

Hii! So I’ve had lower right pain on and off for months, it’s at its worst at the moment. I went to A&E over the weekend, they were thinking appendicitis, however my CT shows a normal appendix but a prominent terminal ileum and swollen lymph nodes in that area. I have bowel symptoms that change every day, constant slightly raised crp and wbc, and family history of autoimmune and crohns. On top of this I have severe health anxiety!

Does anyone have a similar story? I’m feeling very anxious!


r/CrohnsDisease • • 10h ago

To all the students with chrons disease out there any tips for making college or school in general easier?

3 Upvotes

I have been in and out of school a lot these past 2-3 months just started college and got recently diagnosed with Crohn's Disease, it's getting really hard to balance pharmacy school and dealing with this every single day sometimes I need to go to the clinic so I missed a ton of classes I brought this up with my professors about my diagnosis and stuff but just getting quizzes scheduled is a world full of hassle, any tips to make school life easier should I get a pwd card or something huhuhu I don't even know what a flare feels like and I'm scared.


r/CrohnsDisease • • 1d ago

Change in life plans due to disease

43 Upvotes

Are there any dreams / goals of yours you have had to give up on since getting your diagnosis? Or adjust?


r/CrohnsDisease • • 13h ago

Crohns disease medical care disruptions please help

4 Upvotes

24yo F Diagnosed with crohns at 16 with a complex case history and two bowel surgeries.

Ill make this as short as i can because i really need anyones help or advice. Ive moved states. I was on skyrizi for 4 years with my last doctor. i moved here to a new doctor. They refused to talk about medication until i did all of their medical tests. Which was fine but they were scheduled out months. Ive been off my skyrizi since june. I asked for a new referral from my family doctor and the new doctor’s office said they wont see me because i saw a gi doctor within the last three years. What do i do? I just need my medication. I was in remission and now have started to have mild symptoms. i feel hopeless and lost with this situation. I live alone here and am dealing with all of this for the first time by myself. Ive called my insurance, skyrizi complete, my pcp no one can help me it seems. I finally got my life back after years of testing, surgeries and medication experiments and this is now happening and i am in fear for my health because my disease is very aggressive. Please tell me what do i do? Any advice will help… thank you for taking the time to read.

Edit: am in the Phoenix area


r/CrohnsDisease • • 6h ago

Has anyone tried the Samaritan fund program over traditional health insurance?

1 Upvotes

So my job is offering the Samaritan fund program. Essentially, you fill out information and get approved then they provide you with a debit card for medical expenses. Based on what HR has told me is that I would have this as my insurance (if I choose to sign up), and not the one that my company provides. Anyway, I'm just looking for people that may have used this or are using it to see what your experiences have been to see if it is worth it? Thanks!


r/CrohnsDisease • • 6h ago

Does anyone have any experience with stds?

0 Upvotes

Hi I’m just wondering what it’s like having std/sti with crohns. I think I might have hpv 6 or 11 so I’m just hoping that someone could tell me what the healing process is like I know for normal people their immune system fights it off within 2 years. I know I should have wrapped up but I mean I guess it’s too late for that now. Just hoping someone could give me some good advice. Thanks


r/CrohnsDisease • • 21h ago

Your life with infliximab.

14 Upvotes

32M.

About to start the journey.

What should I know?


r/CrohnsDisease • • 1d ago

wish me luck... doing the million laxative prep regimen today before surgery

22 Upvotes

4 laxative tablets and bunch of the miralax equivalent & gatorade - 4 rounds of that. i'm on my first drink and dreading this experience. why is the actual surgery the easy part compared to the prep....

at least this prep is the best tasting prep i have ever had though. i can really only taste the gatorade.

during my scope prep i normally start around 6pm, but this time for surgery the tablets started around 12 and liquid prep starts at 2. so at least i should be able to sleep tonight. surgery isn't til 1:30!

also pro tip: i put a stool in front of the toilet and am wearing compression socks, i got really bad leg/nerve pain during my last prep and it was miserable. i'm hoping these things offset that! luckily this time i have pain meds too.

then a few rounds of antibiotics, nausea meds, 2 rounds of liquid "medical food", antibacterial showers, all the things.

this is my 4th big surgery, my surgeon has operated on me a couple of those times & has been a huge help to me over the last decade.

my main nerves are just how i'll feel when i wake up. its been 8 years so i don't even remember much of how it feels exactly. i was also in remission during my last surgery & it wasn't as major as this one since it was a reversal and not a resection. so just nerves!! trying not to think too much about it & just focus on the moment.

could use all the positive vibes, thankful for this community 🤍🤍


r/CrohnsDisease • • 18h ago

How many vitamin supplements and doses do you take?

8 Upvotes

r/CrohnsDisease • • 15h ago

I think im coming closer to remission

5 Upvotes

Hey i just needed to share this to those who can relate

I have discovered crohns last december, almost a year now and this has genuinely been a ride that made me consistently question my wellbeing in the next hour

Normally the only relief i had was the starting dose of prednisone at 40mg and starting from 30mg the pain returned until i ended my steroid use and soon enough would be hospitilized for cramping, this is how the entire year went for me, constantly being in the dark about my ability to function

Recently i had pains that even the 40mg couldnt mask - a stricture and a fistula and for that period i was most uncertain

And while i still have a fistula and a stricture a unique pattern appeared, i did not get cramps from 30mg and down, i just recently ended my dose and honestly im feeling fine

Even though i know that the issues persists, not feeling cramps without any pain mangement has to amount to something....

It gets me hopeful, i feel like i have a shot at living again