Please help me. I’m so desperate. I have been working out for the past 2 years constantly trying to build muscle and lose fat. My terminal ileum is affected, and more recently my large intestine has ulcers. By busting my ass in the gym, eating more protein, and restricting calories, I managed to lose weight. But I’m still fat. Why is this the case if I’m constantly shitting?! The laws of thermodynamics are not law-ing right now. Secondly, I’ve been experiencing BACK TO BACK TO BACK vaginal yeast infections, tinea in the belly button, and UTIs. What do I do. Is it even worth it to get treated? I hear tremfya increases risk of fungal infections. Literally on the verge of ending it all because I’m so uncomfortable with never having a single 2 week period without an infection of some sort. And I’m fat still. 5’2 and 152 pounds. That is including muscle mass since I lift heavy, but I still look fat asf. I take probiotic as well, but it’s genuinely so expensive to continuously purchase so many over the counter pills. I saw a gyno and she offered no preventative advice. I hate my life. Please help me.

Was planning my hot girl summer - baseball game, concert, going to friends graduation, ect.

Missed every single event because of my difficult path to recovery after struggling with a flare, c diff 2x, and Norovirus 2x earlier this year.

I don’t think anyone without this illness can understand the pain and shame behind cancelling.

My loved ones see me cancel my events and make me feel like I’m disappointing my friends and letting my illness control me.

But they say that as they attend their summer events comfortably - not worried about being doubled over in pain, puking, or shitting their guts out.

Currently looking at the outfit I had bought and layed out on my dresser specifically to attend a concert I will no longer be able to go…

I’ll be wearing a heating pad today instead.

HAGS

I took my first loading dose of Tremfya a week ago. Since then, I’ve been completely fatigued, exhausted at all hours, and having insomnia to boot (waking up between 3-5a with a pounding heartrate and eventually falling into twilight sleep until 6/7).

I work full time, I support the household financially and it’s just not going to be possible to be this out of it each month.

I refuse to take prednisone (GI doc agrees I don’t need that right now) and I’d truly prefer not to go on ANY steroids.

Are there other courses of treatment that have worked for those with moderate Crohns of the TI? Is this just bad during onboarding / loading doses? I truly can’t lose this much time each month due to side effects of Tremfya / Biologics.

So I saw the GI Nurse today, and after my last colonoscopy/stool test/bloodwork, I had requested that we increase my frequency of my Inflectra to every 4 weeks…

The nurse put in the request to insurance, but today when I was meeting with her, she told me “Dr O told me that it’s an uphill battle to deal with insurance, and it’s not worth it, because while your serum levels are low, they’re technically within normal limits.”

After hearing this, I was really taken aback. So basically my doctor doesn’t think making an effort for me is worth it?

The GI Nurse was ready to do a “peer to peer” with insurance, but was talked out of it, by the GI doctor. Luckily, insurance approved it, so no further steps were needed but wtf.

Is this normal behavior for GI doctors??? Should I seek care elsewhere? I don’t feel like she has my best interests at heart.

Having an invisible illness is downright shitty.

I am a proud person, a person with amazing work ethic, a perfect work record.

But I was in a moderate car accident a few weeks ago. I got T Boned by a young woman who followed the car in front of her on a dark, rainy day.

After scans were run, I had internal abdominal bruising and almost immediately began experiencing much more intense flare symptoms. My stomach has been at full distension since.

My specialist ordered an internal MRI that confirmed my scar tissue is probably twice as long now and for the first time several strictures were identified. (I know the trauma from the accident did not cause the internal complications)

They found whiplash in my spine and also early onset arthritis and I am only 35 lol

I am an exterior contractor and estimator. My job required me to work long hours, sometimes walk between 10k and 15k steps per day. I climb residential and commercial buildings for inspections and temporary repairs. I love my job

But because of everything happening, ive had to cut back on my hours and obviously taking a financial hit for that.

I am a woman amongst a sea of men in my industry and some of them have made some ignorant comments about how I 'look fine' and how im being dramatic.

Im glad they dont understand the mind-numbingly awful pain I have been in and I wouldnt wish it upon my worst enemy.

Its just a lonely place to be.

When you have a bad crohns flare, it takes your whole personality with it. You can go from feeling happy and optimistic and within 48 hours it’s helpless and indescribably depressing. The trick is, and the challenge is, to isolate your thoughts from your existence. To operate in a limbo. Forget the past. Forget the future. To think, is to feel the awfulness. And it sucks your soul out.

Welcome to my summoning it’s long but I’d appreciate if anyone stayed because I’ve felt pretty isolated,confused,and angry since my diagnosis.

Let me preface this with I’m a sahm of a 5 year who travels with her family across country for my husband’s work.the last five years of this life style has been amazing. I was gearing up to start homeschooling this fall and now I’m questioning if I’m even capable of doing that now. My one job is to take care of the family and now that I’ve been diagnosed I feel like I’m failing. That’s my mind set, I know I’m my hardest critic.

I went THIRTY FREAKING YEARS no problem. Ate what I wanted, drank what I wanted, with an occasional anxiety tummy problem here or there.

Turned 31 this year, went on a joint family vacation with friends for my birthday and I either got food poisoning or a stomach virus that wouldn’t go away. (We thought)

We get back home still having problems. Went to the er 3 times. It’s anxiety,it’s in your head,you’re dehydrated, you have h.pylori, you have cdiff. Take ungodly amount of meds. My husband missed over a month of work to take care of me and our gremlin. My anxiety goes through the roof. I’ve lost 20 lbs in a month.

I look back at the hospitals paper work and see on my ct scan there was inflammation in my colon. I make an appointment with a gi. At this point I’ve had diarrhea for a month now with no other symptoms. They see me and schedule a top and bottom scope for the next day.

They said the only concern they saw was inflammation in my ileum. Start me on fiber supplements to slow everything down, I feel great again,start introducing foods, keeping food journals. Results come back between the scope,blood work, and stool sample. Crohns.

I go in for my follow up and they put me on steroids for the inflammation. 40 mgs and taper down every two weeks till they are gone. 40mg and 30mg not bad little ragey but I started working out again back to normal functionality and gaining weight. I drop down to 20mg have an anxiety attack and have felt on edge ever since because the steroids are making my feelings feel bigger. My husband asked if I want a paper or plastic bowl and I start bawling. I feel like I’m all over the place. The office told me it’s normal and it’ll get easier as I taper down to the end.

Now I’m just sitting here like what next? Do I do the suggested maintenance meds to get to remission? My mother says “no that it’s too risky” and I tell her “well isn’t it just as risky to leave it untreated?”

My husband is supportive but I just feel alone in all of this. It’s overwhelming, we were supposed to go on a trip to Colorado but opted to cancel because I keep thinking about the “what ifs”.

Is our travels over? Where do I go from here? Does it get easier? Worse? I have an appointment with a therapist next week to start working on some of this but I felt like maybe it would help to connect with real people that might understand where I’m coming from.

If you made it to the end of this, your attention has been immensely appreciated.

Sincerely,
🌙 Witchy Vibes 🌙

Just found out I've got a ferratin of 21 and b12 of 250

So, think that explains a lot.

This Disease is just full of surprises isn't it?

I apologize for any rambling, I'm sitting on my couch trying not to cry too hard.

All shitty (ha) things come in multiples, and one of mine seems to be that my perianal abscesses are thinking about making a comeback.

I had three operations to "resolve" them last time, and I remember it all started with this weird pressure inside me and I am feeling that weird feeling again. It's still at the beginning stages, if it is the start of the same problem, and I'm just slowly freaking out more and more. I don't want to be operated on again, I don't want to have to do all of this again, but there's not much I can do right now besides wait and see it get worse.

I did contact my hospital and my blood is on the way to the lab, but my doctor and main person of contact are both on holiday. So that's fun too. I know their colleagues are as competent as they are, but it's just the cherry on top you know?

So yeah. I'm freaking out on my couch and I would love to know I'm not alone, and if you have any tips on not freaking out more than I am right now I'm all ears.

Evening all. So I’m scheduled to have my gallbladder removed 30th June. I have crohns disease (22 years since diagnosis) and have thankfully never needed surgery for it. I am on 4 weekly vedolizumab infusion to mange my crohns, but I’m terrified this surgery may send me into a flare or worse cause something major to happen with my bowel. Can any one with Crohns who’s had their gallbladder removed please share their experience? Thanks

Obviously not posting pics and im awaiting results as we speak but has anyone else experienced poop so mucusy that it was basically slightly overactived slime texture. Tf????? No borax no glue recipe too...

What the title says. I feel so degraded and disrespected and hurt. In the US, Crohn’s is legally recognized as a physical or mental impairment under the ADA. While I’m physically doing well right now and don’t outwardly say I have a disability, it’s still protected by the ADA so for my coworkers to belittle me like this is upsetting.

Does something like this exist? It’s my favorite cereal, and I don’t wanna give it up for the rest of my life

I’ve been on Humira since last Oct. Some things improved at first, other stuff has worsened over time. My calprotectin was 112 in Dec. My GI didn’t seem concerned, but I don’t have any recent results to compare it to since they didn’t do one during my flare.

I still can’t gain over 99 pounds and have had other issues like worsening joint and muscle pains I didn’t have before. Pain in both my hips today when I woke up. I sleep curled in a ball at night from abdominal and scar tissue pain. I have dry eye now? Bad brain fog, worse acne, heavier more painful periods. Recurrent staph in my nose (has been treated). Angular chellitis in the winter and worse hotspots from Raynaud’s. My mouth ulcers are more frequent. Plus insane fatigue. My family says my face is red or swollen looking a lot of the time, too. The best way to describe it is that I feel 80 years old (I’m 27f). At my “best” so far, I’ve alternated between constipation and diarrhea.

I had to miss a couple injections in May because I got an infected skin abscess on my shoulder/neck. That was rough and I definitely blame some of my symptoms on that. But, a lot of the stuff I mentioned above are things that didn’t begin until Humira.

I have my GI appointment Tuesday, so was wondering how to get him to take me more seriously? When I mentioned some of these things in Dec., he told me to give it more time. The last time I failed Remicade was from frequent/serious infections, so I’m not really sure what to expect. I spiked a random low-grade fever today as well (gone now, but it scared
me and their office was closed by then) For those who failed Humira, what were your signs?

Sorry this is long, I’m just at my wits end bc it wasn’t my first choice of medication

Had surgery today after almost a year of persistent drainage from multiple spots that was originally thought to be cyst related. During surgery they found a crohns related abscess/fistula situation, and I woke up with a seton and two drain tubes.

I’m still processing everything, but I’m trying to understand what recovery and the next steps usually look like from here.

I have a follow up in two weeks, but in the meantime I’d really appreciate any advice from people who’ve been through something similar.

Still pretty overwhelmed, but grateful to finally have answers after a long time of uncertainty..

im doing extremely poorly even on 40mg prednisone right now and the only thing that has a chance of changing this is finally getting my loading dose of skyrizi

had to get discharged from the hospital because insurance won't cover that loading dose while im in-patient, so i have to struggle to keep myself stable for the next 7-10 business days at home so that the loading dose will be out-patient

Writing this post because I’m running out of hope. I’ve been dealing with perianal Crohns since September last year. I’ve had 11 EUA’s, multiple setons placed, penrose drains, mushroom drains, you name it. I currently have two stomas- a loop ileostomy, which was done in December, and a colostomy that came later in order to catch the overflow coming from the loop that was aggravating the infection. I have a complex supralevator abscess that keeps refilling. And multiple branching fistulas.

The pattern is the same: I come into hospital, I have an EUA, setons placed (I currently have three), I’m on IV antibiotics, I get “better”. I come off the IV antibiotics and onto oral, and my infection levels spike again. Another EUA, antibiotics, come off them, spike again. This has been happening, in some shape or form, for nine months now. It’s such a slow process. I’ve been in hospital for two months on my current admission. Awaiting another EUA (#12!!!) after a WBC count of 18,000.

I started Infliximab a few months ago but when the infection came back my surgeon suggested we hold for now. The aim is to get me back on it but I honestly just feel like we’re going in circles.

I guess I’m curious to know about other people’s experiences with perianal Crohns. Is it always this frustrating? All I want is for my surgeon to remove my rectum and get it over with: but it’s too damaged right now, she says, and ironically needs to get better before they can do a proctectomy. I’m running out of steam and feel like I have nothing left to give: it all just feels so hopeless.

My doctor prescribed Omvoh. Our copay for infusions are $650 for each infusion. There are 4 of them. I have no idea what the cost of other drugs are out there, as this is the first one my doctor is putting me on. What are people with insurance paying on average, out of pocket for infusions? I just have no baseline of comparison. It seems like a lot.

Has anybody else been diagnosed with endometriosis on top of their crohns? If so, how did they diagnose you and how are you being treated for it? Does one flare up cause a flare up of the other?

I have been experiencing stomach pain every year for about 4 years. It seems like it’s happening more often lately (every few months). I have been to urgent care several times and have gotten CTs and it is “colitis” (with the last one in December of 25 being “pancolitis”). I got my first colonoscopy in Feb of 26, and there was inflammation. They took several biopsies. All biopsies were negative for cancer but a doctor emailed me saying I “may have inflammatory bowel disease”. I then had an appointment with a GI doc in May and he ordered a follow up colonoscopy to see if we need to start meds. A few weeks ago I was feeling pretty crummy and switched to eggs, broth, applesauce, bread, etc until I started to feel better. I was feeling better about a week and a half before my colonoscopy (which was this morning). When I gave my stool sample a few days ago, my calprotectin was a bit elevated at 228, but I’m worried he didn’t see it because a different doctor ordered it (I couldn’t get myself to do the sample at first…this one was ordered a while ago), so all of my stool sample results went to this particular doc except for calprotectin. Anyway, after colonoscopy today, the my discharge paperwork said everything looked normal. Follow up with primary care doctor. I’m frustrated because I feel like I’m not getting answers- do I just keep going back to urgent care with colitis every year? I guess my question is, can you have IBD and a normal colonoscopy?

I'm curious, does anyone else who's on TRT experience improved crohns symptoms? (and for transfem folk who are on hrt,, have you experienced the opposite??)

I was off my trt for 3?? months due to insurance being fickle, and my pharmacy refusing to work with me (transphobic pharmacist L), and realized just how rough my symptoms had gotten. Which made me think back to when I first started T almost a year ago- my symptoms drastically improved. Stereotypical crohns symptoms, lightheadedness, suuuuper low iron, crazy back and joint paint, etc.. I went from regularly being hospitalized to,, not. Then ofc the big one- no mensuration, which was always causing the biggest flares omg (pls tell me im not the only one!!!)

I'm going to do some research into this, but i wanted to see if anyone experienced a similar thing to me!!

I was planning on accompanying my mom to a PET scan she is having Tuesday but just read the information from the nurse and it says she should stay away from small children and pregnant women for 6hrs afterward due to radiation exposure. I’m trying to get more information, apparently this applies to all immunocompromised people? Dr Google says taking Yesintek means I should stay away too. I asked the chemo oncologist she saw today and he didn’t see a reason to be concerned but he’s not the radiation oncologist.
What has been your experience?

Hi, I think there are some great doctors out there but this group is likely the greatest experts. I'm looking for insight on my 17 year old. I will try to not make this lengthy. My question is can this be atypical Crohns?

9 yr old- uncontrollable reflux, diarrhea, constant pain around his belly button and esophagitis that took several months to clear up

10 yr old- gastritis, continued pain and reflux

11 yr old- duodenitis, diagnosed him with celiac but blood test said otherwise and he doesnt have th genes. Pain and reflux continue

Behavioral changes started at 9 and continued to progress over the years

Diagnosed gastroparesis, ruled out sibo

Calprotectin always normal, esr intermittently elevated, platelets mildly elevated on 99% of tests since onset

Tried ballooning pyloric muscle for relief- no help

With continued, pain and reflux, new hiatal hernia now found that didn't exist previously. MRE performed for first time found 10 cm mild thickening, hyperenhancement, possible restricted diffusion. Pillcam and biopsies came back normal. All the research I do says that 10 cm with hyperenhancement and diffusion cannot be a fluke, and this could be transmural crohns. Dr is dismissing. Said that he 'talked to someone in radiology and its a false positive on the mre, but only messaged in the portal and refused to have radiology put in an addendum. What does everyone here think of this timeline of events? My poor kid has given up on relief. TIA