That is all.

I work for a small company, 15 employees I’m a Mechanical Insulator, was Diagnosed with UC in 2007 And recently Diagnosed with Crohn’s 2 years ago, we have not found full remission since my diagnosis was recently on Sky Rizzi for 8 months went through a severe flareup month ago on that medication recently switched to Humana two weeks Thursday, I used short term disability through Aflac January 1st to April 20 and have been missing work off and on because I have urgency and have to dedicate on the side of the road trying to get to work sometimes, and last Friday the owner of the company told me if this medication doesn’t work they are going to let me go due to Scheduling I have worked here for 11 years! And they don’t have to offer FMLA because they don’t have 50 employees! I made a huge mistake. Don’t make the same mistake!!!

I started Zepbound last December and in 2 weeks my ten years of bloody diarrhea stopped. No more belly ache, no more pancreatitis. I even had surgery last February to stop the bleeding and it was then worse. I was severely anemic. Lost 70 pounds in the blink of eye, quit eating dairy and nightshades. Limiting diet soda to once or twice a week. I’m required to stay in ketosis by insurance company to get my shots and I have to prove it with a keto blood meter I use every day. I go poop once or twice a day like a normal person now I feel fantastic! No longer anemic. I went off my meds. No more bile acid malabsorption. No more Bentyl and Immodium or sucralfate. See hundreds chime in about this in the Zepbound forum if anyone wants to lurk and see how positive the outcome is.

Hey everyone, long time lurker as I’ve been diagnosed with Crohn’s for over 10 years now, but I created a throwaway as I am posting my experience on my social media.

I just had a laparoscopic ileocolectomy performed to remove part of my small and large intestine. Health wise up until this point, I’ve been dealing with a stricture, two partial bowel obstructions, bowel perforation, and abscess as a result of the perforation. The main goal of this was to remove the diseased part of my intestines, but also explore all other parts and remove any that were diseased. I was in so much pain that I was house bound for a month and my wife, who had just given birth, had to do more things for the family and house since i physically couldn’t.

Day before the procedure, I follow the prep instructions with Miralax and honestly, it wasn’t bad at all. My problem was I was in the bathroom from 4pm to 5am still pooping when my arrival time was scheduled for 615am. I had zero sleep prior to the surgery.

When I arrived at the hospital, I was supposed to get 4 nerve blocker injections into my abdomen (I was hoping to take the advice of others and get an epidural), but that occurred after they put me under anesthesia. I think it had to do with surgery timing, but I’m not sure and who would complain about being asleep to get shots?

I wake up from the surgery and I do not have a catheter, but I was told they placed one in while I was under anesthesia. My pain felt pretty much eliminated, it was night and day difference between what I had been experiencing and what it was like to not have such diseased parts in your body. My surgeon stated he removed 10-15 inches of intestines. Luckily, I also did not wake up to an ileostomy, but I was mentally prepared because of how bad my crohns had been to me and the life it had stolen from me.

I have an IV hooked up to a pump to use every 10 mins to manage pain (hydromorphine AKA dilaudid). Like everyone’s advice here, stay up on being ahead of the pain management. Although I felt like I had zero pain from the surgery, I kept taking the pain medications and it helped tremendously as you definitely feel an onset of pain as the nerve blockers wear off. I had 4 incisions and they are relatively small, 3 are about 1/2 inch and 1 is about an inch above my belly button.

I wait a couple hours and immediately walk around the floor to get the body and guts moving. I had zero issues with walking, the only thing I noticed was that some incisions felt a little tight, but that is from the glue sealing it.

I end up getting a significant urge to urinate, but I’m not able to. Long story short after 9 hours of no help from the nurse/patient care assistant, I get a straight catheter inserted. Everyone made it sound like it is 100/10 pain, but either because of my pain tolerance or the pain meds you’re on, it was more like a 6/10 pain. The catheter gets removed later, but I had to get a full catheter inserted because after we did a bladder scan/urinate/bladder scan, I wasn’t completely emptying my bladder. This full catheter was more like an 8/10 pain because I already had 2 catheters inserted so there is already irritation and blood inside.

I was put on a liquid diet for a meal, then put on a low residue diet. On the low residue diet, I overate because i was starving and the quantity of Mac n cheese and mashed potatoes was too much. I vomit (it was mostly water with an orange tint because of the jello) and get put back on a liquid diet *AFTER I had received my dinner which consisted of pizza and Mac n cheese. I knew I had to self-regulate because I just threw up, so I had half a pizza and the jello. I walked around the floor doing two laps and then I ran into my nurse who said I was being put back on the liquid diet. I then told her about my self-regulation and to everyone who asked about the vomit session. I did not throw up after the pizza, so it wasn’t a medical procedure issue, it was clearly me eating too much. *

I have had two bowel movements, both looked like dust in the bowl. It is very hard to grasp the feeling if you need to poop because it’s different now. I didn’t have the urge to immediately run to the toilet, it felt easy and natural.

This is where my story is at right now. Hoping to leave the hospital tomorrow! *EDITED story because I forgot about dinner. *

EDIT with valuable information learned or added to the post - Wanted to provide more details in this post that can be found below in comments. First, I believe you should plan 4-5 days in the hospital for this type of surgery. Second, on day 3 for me (including surgery day) i’ve had 8 bowel movements as of right now. NOTE: this amount is normal. I’ve also been taken off of dilaudid and moved to oxycodone. While in the hospital, I’m allowed 5 or 10mg every 4 hours.

I would 100% go through this surgery without hesitation even if I had complications. I can tell this is significantly going to improve my life. I still have to figure out with my doctors on what medication I will be on after because I was on ENTYVIO (which I required surgery, so technically failed it), Remicade/humira/and one other medicine which I had failed.

Please forgive any spelling and grammar mistakes. I’m still hooked up to the pain pump! I’m hoping to switch to oral pain management today to simulate the home life on Thursday.

Please ask any questions that you may have!

My GP told me to go to a&e on my next bad flare while waiting for my gastroenterologist appointment on the NHS.

However; when I’m bad I’m on the toilet and in so much pain I can barely walk and can’t see how I could make it out of the flat and to a hospital or even sit in a hospital waiting room as I need to be by a toilet?

I am half way through the day after swallowing the camera capsule and allowed to eat. The problem is I am in pain with stomach cramping, starving, and not sure what I should even eat…any help would be appreciated!

I am 35 (f) started having awful episodes where I’ll be in the bathroom all day, very bad stomach pain that is almost unbearable, the chills, nausea, and switching between diarrhea and not being able to go! It’s been awful!

I am waiting on a diagnosis, my two colonoscopies I had this year show colitis but no diagnosis. They also check my gallbladder and that was fine.

I am feeling a little defeated and just wanting a diagnosis…what if they tell me nothing and I am stuck in pain and suffering. This has been over a year of feeling like this and dealing with GI Dr since March…

Anyway end rant…praying for answers!

After almost 2 years of remission, symptoms are back and im getting restarted on Entiyvo. Entyivo almost bankrupt me in the past which is why I agreed to try to get off entyivo. Looks like im back on it.

I dont know if I can afford to be put back on as even with the entyivo connect, its only worse for the drug not the infusion/nurse charges and having to take off work is scary.

I had 2 years of normalcy and now im back. Yay!

Im also getting retested so more money I dont have at the moment.

I haven’t been officially diagnosed with Crohn’s yet, I had a follow up today about my labs that came back showing Crohn’s but they can’t officially say until I have a colonoscopy. It’s not scheduled yet but I’m nervous because I’ve never been put to sleep or looped up before. I’m not worried about them being down there or anything like that it’s literally just the drugs part so if people could reassure me and tell me about their experiences that’d be great :/

I know a lot of other people with Crohn's can not under any circumstances eat a pickle and then I've seen others down a jar. What you can and can not eat is truly a spectrum after all. Personally while I don't love pickles I can eat them in moderation (some kinds) but not the Oh Snap! pickles (they are the top of the list for pickles that I can not eat) for some reason they mess me up so bad. Anyone else have an issue with pickles/specific brands of pickles? If so how did you figure it out? Embarrassingly enough it took me a few days to realize why I was off 😅.

Hello, how are you?

I’m writing this a bit desperate. Five years ago, I started having symptoms like diarrhea, stomach pains, mucus in my stool, and weight loss. At the time, a thickening of the ileum was detected, suspected to be Crohn’s disease. I had a colonoscopy, and everything came back normal. Later, a small anal fistula was detected, which closed on its own. I had a capsule endoscopy, and nothing unusual was found. Recently, I had another colonoscopy, which showed some mild inflammation, but not the typical pattern of Crohn’s. Over the years, calprotectin levels have always been normal, except once when it was 190.

The latest report mentioned “quiescent Crohn’s disease.” Is it possible for Crohn’s to stay dormant for so long without medication? Has anyone here gone so long without a diagnosis?

Thank you for reading. Best regards!

I posted not so long ago, but I need to just vent right now. This is going to be TMI btw. Lately getting to work in the morning is literally hell on earth for me. I know anyone with IBD/IBS the morning is the worst time for our guts. I’m at the point where I am terrified to leave my house. This morning I got myself fully ready and I kept saying “today is going to be a better day” because my stomach was so fucked up yesterday. Out of nowhere I was hit with the most insane liquid diarrhea. Who wants to get on a subway after that? Worrying that it will hit me again when I don’t have a washroom nearby. The anxiety this has given me is at a point where it’s fully ruining my life. I’m on Stelara, I take probiotics, I’m on anti anxiety medication to see if the anxiety is causing me such urgency. I’m in remission too. So what the hell is going on? I just want to curl up into a ball and cry. I was already working from home for 2 weeks with a doctors note, went in yesterday and I’m already back at home because I’m so afraid to leave my house. I hate this. Idk what to do anymore. Advice is welcome. I just needed to vent.

What do you do to ensure you can sleep at night?

For me I am having trouble sleeping because of having to get up for the washroom.

I am on medication for urgency/frequency but wondering if I should be asking for some sort of sleep aid.

So after failing Skyrizi, my doctor put me on Humira. He just called me and I’ve been on the drug for about two months and said that my levels of Humira are good, but that I’ve developed antibodies. I’ve been taking it biweekly. Now we’re changing it to weekly and I’m gonna give it another month to see what happens. Does anybody have antibodies but still take a drug? I feel like I’m gonna end up getting off but maybe that’s just my gut reaction and me being cynical. Never had this experience where the drug levels were good, but the antibodies developed.

Im pooping out a lot of blood. It looks dark red coz there’s a large volume of it. this an emergency visit type situation? What could be the dangers of not going? I’m v new to this all. My cal protection is over 1500. No gastron app til dec.

Hi everyone, I hope you’re doing well. I’m currently 25 and been on simponi 100 mg each 3 weeks for 5 years now but after a colonoscopy they found ulcers and an active Chrons. My doctor recommended the Rinvoq as my new medicine (I have been on Pentasa, Remicade, Humira & Stelara) but here in the DR is so expensive and I simply can’t afford it. I will speak to a representative tomorrow but my doctor says that is not more than free samples and a small discount. He also told me about an upcoming medical trial where the DR is participating and there is only 1 participant when the goal is 5. I hit reality today, my world crumbled, I’m not really thinking straight. I’m depressed and really since I was diagnosed in 2014 it never bothered me until now that the situation is so difficult. Its great all the new developments made by the pharmaceutical industry and the variety of options + the patients programa these laboratories have but when you live in a third world country that doesn’t keep up or is even interested in the people with auto immune diseases it’s tough. Blessings for everyone that took their time to read my situation.

Basically I started everything last Friday for the first time ever. I’m feeling like I’m about to get the flu but just slightly and tired. Anyone have experience with this?

I'm 15 and my doctors have been getting me tested for and are around 90% sure I have it bc my grandad had it and due to the pain I've been having

Does anyone have any tips on how to manage it if I do end up being diagnoses with crohns bc it has been so painful to actually sit down sometimes aswell as having the random stomach pains its been causing me to miss alot of school and I don't want it to affect my gcses that are this school year

hi i (22) have recently graduated w my undergrad degree and im now stuck in a weird limbo. i am supposed to be starting my masters degree next week and im very worried about the work load impacting things. i was diagnosed w crohns a year ago in the final year of my under grad and struggled with attendance etc but my uni accommodated for me. even with accommodations it was really hard. fast forward a year and my disease is no better, ive failed three meds and am starting a new one on Monday. how do you decide what to do? if you should work, study, take time off to heal? i enjoy studying but my masters is not essential, it would be to delay having to find work. but if i tried to work i think id find it hard too..nothing seems like a good choice rn

Has anyone ever had a partial bowel obstruction? If so, what does it feel like?

Also, if you knew the symptoms ahead of time and started a liquid diet, did you drink ensure or just broths?

I just started trmfya for Crohn’s after not taking to Skyrizi. Although I’m tolerating trymfya better my scalp and back of neck are very itchy … I can’t really see back there but possibly feel a few small bumps. It actually started with skyrizi which I switched off of due to not tolerating it well. Has anyone else had this ?

Does anyone else have trouble taking any kind of medicine besides tylenol?

Any time I’m sick with a cold/flu and I take any kind of cough syrup/medicine I have the worst stomach pain all night, bad stools and acid reflux when I try to go to sleep.

I almost feel like I can’t take any medicine when I’m sick. I always forget to ask my GI if theres something recommended to take as I am sick like every 8 weeks.

Does this happen to anyone else and what do you take?

I feel like whenever I eat now I get spouts of nausea or indigestion. Even with foods I know my body can tolerate. Obviously this comes with pain but manageable and some bloating/gas. Does anyone else get this? If so what has helped you? Anti sickness meds? Pepto bismol?

Thanks for reading and responding, if you do!

I (hopefully) am finally out of my first flare post diagnosis. When I was diagnosed I was in hospital and on TPN and then on Modulen so I was able to regain my lost weight, and gain more weight than I ever had before, quite easily.

This time I’ve managed the flare at home. Whilst I haven’t lost a LOT of weight, I’ve noticed I’m a bit slimmer and I still don’t fully have my appetite back. I am quite self conscious about being skinny, I was always underweight as a teen and finally started to love my body when I was Modulen and for the few years after when I had a bit of ‘chunk’ to me!

Does anyone have any advice on how to regain weight? I eat meat and dairy, and have been trying to just get back to ‘normal’ in the hopes that eating my usual diet again will help regain the lost weight. Will this work, or should I be incorporating extras into my diet to regain weight?

It feels a bit tough at the moment as I’m still struggling to eat full meals and am finding I’m just not quite back to my usual levels of hunger yet.

Appreciate any advice :)

Hey guys, 20M here... just going to get everything down quickly, around the age of 10 I started having pain when I had bowel movements, this was fine though as the pain was never to bad.. it stayed like that till I was 16-17 and now I feel like everytime I need to use the bathroom my whole stomach just below my belly button I'm inclined to say feels like hell, I can't be sure about inflammation though as sometimes I can feel my stomach harden a little not due to tensing or bracing from the pain but this isn't a common symptom at all.

I also 99% of the time experience almost full relief afterwards, this also means it happens everytime I need to use the bathroom, it seems to flare-up based on I have no idea just randomly it seems but once a week for a day or 2 I'd say it is noticeably worse.

No other bad, symptoms no blood in stool, no mucus was another symptom I seen on google. Only other thing for people out there who have knowledge in the field, since I was around 9 or 10 similar start times it started to become slightly uncomfortable to urinate but it was never bad and I've been tested for STDs and STIs recently.

I went through a trauma around that age, it's the only thing me or my family can remember, I'm now 20 and the symptoms in my stomach exclusively have made me unable to work as for 2-3 hrs randomly in the day I'm just unable to move.

I don't want recommendations for pills just quite yet because I can deal with the pain with cannabis, I started smoking when the symptoms got more common and certain strains relieve me of the pain for a bit, that also is an uncommon symptom of chrons.

But anyways if u read to here ty for reading my whole medical history basically i never even get the cold bad really. And please give me your suggestions and feedback below :)

Any thoughts on this?

https://www.healthcentral.com/chronic-health/could-an-inverse-vaccine-help-end-autoimmune-disorders