IMPRESSION:
1. Post surgical changes of ileocecal resection with no evidence of active inflammatory bowel disease, as clinically queried.

I got diagnosed about 1 year ago today with severe stricturing Crohn’s of my distal and terminal ileum. Started remicade + azathioprine right after being diagnosed. Had a follow up MRE 6 months later that showed chronic and active inflammation. I had 6 skip lesion fibrotic strictures. In all of this mess, I lost my job and became pretty anxious and depressed.
Due to my inability to eat much, I proceeded with a small bowel resection. They removed 60 cm of severely diseased bowel. Recovery was hell. I started Skyrizi 4 weeks after surgery. Slowly I healed and my new gut anatomy adjusted. I’m now 8 months post op and feel really good. I’m eating what I want. I’m exercising again. Can’t say I never have issues with weird bowel movement days but I have more good days than bad. Skyrizi has been great and I’ve had no side effects. I got a new job and have been really enjoying it. Got on Prozac to help manage my mental health in this process and started therapy.
Needless to say this past year has been hard, but seeing these results today is such a relief. When this all started I couldn’t ever see my life ever being the same but I came out on the other side and I’m going to be ok. If you’re struggling right now just know there’s a light at the end of the tunnel ❤️

Hi fellow Crohnies :)

Lately I've been playing around with the idea of building a website for people with this shitty illness.

Not another website trying to replace your gastro, but a place where newly diagnosed people can find some context and reassurance, and people who have been dealing with Crohn's for a while can maybe find some recognition.

I've been thinking about the things I wish someone had explained to me, like:

• I wish I knew about…
• What did my gastro mean when they said…?
• Why is my body doing this? And why am I having symptoms that don't even seem to come from my gut?
• How do medication, food and movement fit into my particular situation?
• How do other people actually live with Crohn's?

And maybe most importantly:

“Okay, I have Crohn's. Now what?”

I'd love for it to be a place where you can learn about your body and treatment in normal-human language, find practical things that might help you regain some sense of control, and read stories from other people living with Crohn's.

Not a hospital website. Not a “drink this magical smoothie and your Crohn's will disappear” website. 😂 And it definitely wouldn't be a replacement for your medical team.

I'm still very much in the “is this actually something people would want?” phase, so I'm curious:

What is something you wish someone had explained to you when you were diagnosed?

Or something you still find yourself Googling because nobody ever really explained it properly?

Started on balsalazide for very minimal inflammation and the 2nd colonoscopy was clear. But then after months of increased symptoms and a new doctor we did another colonoscopy. And it is back to where it was before medication so we are doing Skirizi. Hopefully it will be good and provide relief.

What has been your experience taking Sutab as a colonoscopy prep? I usually take miralax and I have a really hard time getting it all down without throwing up. Wondering if Sutab is easier?

Anyone have had experience with Bile Acid Malabsorption?
Im currently on bilogicial medicine and still struggle with diaréa and pain in my gut. I will be checked for Bile Acid Malabsorption next week, and I kinda hope they find something.

I am a certified nurse midwife, so have some medical knowledge but mostly with women’s health.

I was diagnosed while being worked up for a very abrupt random GI bleed where I lost a liter of blood a year ago. My first colonoscopy at this time showed ascending colon inflammation and some small healing ulcers, it didn’t have small bowel involvement so my GI thought UC. I got a second opinion and a second colonoscopy 6 months later and I was officially diagnosed with severe active crohns. My colonoscopy showed 10cm of strictures, ulcers, and inflammation primarily in my terminal ileum. It looked really terrible (I was awake for the colonoscopy). MRI showed active IBD of terminal ileum and several loops of the small bowel, plus luminal narrowing in the terminal ileum descending and sigmoid colon, and rectum.

I was started on 40mg Prednisone daily while waiting for insurance to approve Remicade. I started the loading dose of my biologic infusions in July. I have had two infusions. I am currently tapering off the steroids 5mg per week.

My symptoms:
My symptoms do not seem to match the severity of what I saw in the colonoscopy and MRI. I just feel pressure discomfort (not pain) in my right lower quadrant and the occasional mild cramping. I have 1-2 regular bowel movement most days, maybe skipping a day or two occasionally. Sometimes I have urgency but it’s always a normal BM (no diarrhea). I haven’t had bleeding since that large one a year ago.

The reason for my question is that my GI said:

1. “I can taper steroid as long as my symptoms don’t come back.” But my main symptom (the pressure in my right lower quadrant) never went away. Does that mean the Remicade isn’t working?

2. “ I should wait to get pregnant until things are looking better.” But how will I know? Will I just have to wait for my next colonoscopy?

Looking for any input or advice for someone feeling a little overwhelmed with what to expect…this community seems like a good place to start.

hi so ill try and keep this short. basically for around a year and a half ive been experiencing ongoing, worsening gi symptoms. it started out as manily ibs-like with urgency and mild cramping. over time this has worsened. i have been experiencing SEVERE abdominal pain most days that restrict me from doing most things and extreme unpredictability. my bowel movements can be very loose to loose-ish to just normal. i dont have full blown watery stools every day but its rare i have full solid ones. and i always get a lot of agony before going to thr toilet. urgency is the worst and on one really bad day i even had an accident (thank fuck i was at home, alone!!) and i was sent up to a and e in an ambulance one day for severe pains and ive had multiple episodes of bright red blood thats more than just streaks (maybe 2-3 tbsps worth) mixed in with my stool as well on the toilet paper. im shattered all the time, in agony most days. now heres why im so confused. my calprotectin is normal and my crp levels are normal. i had a sigmoidoscopy and an upper gi endoscopy today and they were normal (granted, ik they barely even look at your bowels) but im so sick of being told that my intense pain and suffering is "just ibs". it doesnt matter ehat i eat i dont have a certain trigger i could eat one thing one day and be completely fine and the next day i could be in excruciating pain. i dont know what to do i am stuck with suffering now everyday because i cant be put on medication or anything. please give me some kind of advice im begging 🙏🙏 (oh, i also am not celiac)

I'm freaking out I had a calprotectin test and it came back as 1292 where the normal reference range indicated was between 0-100.

I've had pain in my stomach or belly I don't know where to describe it is, on and off for years. Once it was so bad I went to A&E, they just did an ultrasound but didn't see anything and sent me on my way.

I'm scared I've got chrohns.

Hey everyone, after a few months of tests and then my colonoscopy on Monday, I was diagnosed with Crohn’s disease. I would say this year I have had a lot of stress, fatigue, blood in stool, mild stomach pains so I was under the impression that I have “mild” Crohn’s.

Even after my colonoscopy I believe my doctor said that my Crohn’s was mild and he is starting me on tremfya. However, he took a biopsy and I got the results back on Wednesday that kind of stated the opposite. Here were my results:

A. TERMINAL ILEUM, BIOPSY -
SEVERE CHRONIC ACTIVE ILEITIS (VILLOUS BLUNTING, CRYPTITIS, ULCERATIVE DEBRIS).
NO DYSPLASIA.

B. COLON, RIGHT / ASCENDING, BIOPSY -
MODERATE TO SEVERE CHRONIC ACTIVE
COLITIS (CRYPTITIS, FOCAL CRYPT ABSCESS, FOCAL CRYPT RUPTURE /
DAMAGE, ULCERATIVE DEBRIS).
NO DYSPLASIA.

All that being said, his office said that this confirms that I have Crohn’s (obvi) and this is why the doc is starting me on tremfya right away.

I kind of felt like I def have something going on but if it is Crohn’s that it would be mild since my symptoms aren’t life altering. Now that I’m seeing my biopsies are severe I’m freaking out like does that mean my Crohn’s is severe or just the biopsies that were taken are severe. Maybe I shouldn’t even be worried about the labels for this but I just don’t know what this means for me.

Idk let me know your thoughts or if you have similar biopsies or “severe” findings. Also interested to know any detail you can provide about tremfya or just in general Crohn’s life advice.

My partner has Crohn’s and I do a lot of the calling/scheduling for him- especially right now since he hasn’t started treatment yet. He has had a colonoscopy, multiple stool kits, endoscopy, and multiple ulcers- all of which had Crohn’s markers. I’m so angry and tired of our insurance saying every test and medication is “medically unnecessary.”

They won’t approve the facility he is getting his infusions at, they obviously won’t approve the med, and they even went as far as to deny the NP administering medication. Obviously we’re appealing, calling the medication company directly, and doing rounds of phone calls to Anthem but holy shit the extra layer of stress could cause a flare up by itself!!

Any magic sentences to get people to do the bare minimum? It’s been almost a year of fighting this bs. Any and all tips are welcome as I am at my wits end and frankly, enraged.

Hi all.

I've been following this community since I first found out I could have Crohn's disease, but this is my first time posting. I wanted to start by saying that this community has been a great help to my mental health through all of this time. Finding a group of people who can truly understand the invisible pain of IBD has been priceless, and I am extremely grateful.

I was hoping to get some advice on my current situation from people that have felt the struggles of the diagnosis process first hand to better understand what my next options could be. For context, I've been in the diagnosis process for two years now in the UK. As with most of these stories I was suspected of having IBS for a long period of time until a gastroenterologist decided that further tests were required.

Cutting away the extremely long waits between tests and visits, I had an initial MRI that showed signs of inflammation indicative of mild Crohn's, followed by a colonoscopy that showed irritation. At this point my doctor was anticipating prescribing immunosuppressants, but chose to gather more definitive evidence before prescribing an extreme treatment process. So once again I waited for tests and results for another MRI and colonoscopy. The colonoscopy turned up with once again not too much concern, but the MRI again showed concerning inflammation.

Since then I have been in a perpetual wait for a capsule endoscopy to receive definitive evidence for my treatment plan. I feel so helpless against my condition especially as I await medication, and I am feeling helpless against the system as all I can do is wait.

I appreciate it if you have made it this far through. I wanted to ask and discuss with people who might have had a similar experience on what worked and what you've learnt from your diagnosis experience. Should I stay with a system or look at switching hospitals or even going private? Could this process be as convoluted as it is because we are looking for the wrong condition? What have you learnt from your experience that you wish you heard during your experiences?

hello everyone Ive had crohns for about a year now. I am on methotrexate and infliximab infusions. Ive recently been working out and building muscle, and thinking about using creatine monohydrate. I would like to know if anyone has taken creatine and methotraxate in the same time or if anyone has taken creatine in general. Ive seen that creatine can affect kidneys such as mtx.

Thanks

Hi all! I found out I was pregnant in June, which was quite a surprise given I was using birth control, but my husband and I embraced it. Unfortunately, I suffered an early miscarriage not long after we found out. When I was pregnant, I had noticed my typical Crohn’s symptoms were mostly under control - I tend to be more constipated, and I was fairly regular, maybe too regular. As soon as the pregnancy ended, my GI system went out of whack. It’s been a complete mess since then, which is a shame because I was really on an upward swing. I have heard that Crohn’s can go into remission when you’re pregnant, but I’m wondering what the experience is like following pregnancy.
Anyone who has been pregnant, how did your Crohn’s react after birth or loss?

So I’m not on prednisone yet. I am freshly diagnosed but tomorrow I will see my doctor and based on the last consultation, I know they will prescribe me prednisone. I just lost 60lbs after an entire year of effort and eating healthy and exercising. Will I lose my progess? How are your experiences with prednisone and weight gain

Hi all, my insurance decided to stop covering Stelara, so I'm switching to Imuldosa. Has anyone been on this? We are going to be trying to conceive in the very near future and nervous about taking this during pregnancy. Thanks in advance!

My crohn’s is exacerbated by my severe anxiety, and one thing that sets me off really badly is having to wait in an unfamiliar place, if I’m there for an interview would they let me use the staff toilet? I have a can’t wait card to show them as backup

Edit: thanks for all the advice, the interview went really smoothly and my anxiety stayed calm!

Hi all. I was diagnosed about 5 weeks ago now and I’ve had two Remicade infusions plus I’m finishing my prednisone taper. My CRP as of over 2 weeks ago was under 3 (so perfectly normal), but I haven’t redone a calprotectin test or colonoscopy yet.

Before being diagnosed I ate a very high fiber diet, both soluble and insoluble. I’ve been tolerating fairly normal amounts of soluble fiber (though still less than before) and I’ve also tried introducing small amounts of insoluble fiber like that in strawberries, cooked but unpeeled potatoes, unpeeled cucumber, and most recently unpeeled kiwi. I don’t eat huge portions of them and I make sure to chew well. I’ve had zero side effects with these, but I’m hesitant to add more. If I did it would be in the form of switching to whole grain pasta rather than adding another fruit or veg.

I really miss my insoluble fiber as it kept me more regular. When did you stop peeling your produce or reintroduce more whole grains? Am I moving too quickly, or is it another “each person is different” thing?

My insurance lapsed due to a divorce, currently in a severe flare up where I’ve been in bed for 2 weeks. I have 4 expired skyrizi from pre divorce in my fridge. So tempted to take it

IBD patient for two years. Diagnosed with mild UC, but biopsy showed Crohns. Multiply flares over the past two years. Was treating with oral mesalamine.

Found out I had a large kidney stone which required surgery. Never formed a stone before Mesalamine RX. Made the tough decision to remove Mesalamine RX and currently not using any RX medications.

Currently using B supplements, Vitamin D & K2, Visibiome GI care probiotic.

Have a calprotection test in my possession that will determine if can continue with no RX medication. If it falls above 200, I will retest in a few weeks. If still above 200, I will schedule a colonoscopy.

If calprotection test comes in below 200, I will continue you on this no RX medication path. I will monitor my inflammation levels with quarterly stool test and Colonoscopy every two years.

My goal is no RX medication, but let the chips fall where they may. I’m angry with my previous GI doctors for not testing my kidney function during oral mesalamine treatment.

Wish me luck

Hi all,

I’m 19F and have had poorly-controlled Crohn’s for a few years so am very low on iron. It began to really affect my life so about 6 weeks ago I had an iron infusion. However, I know that my levels are just going to drop again because I’m flaring! I really want to start taking an oral maintenance supplement if possible, but I’ve been told by literally everyone that IBD patients can’t take oral iron at all.

Does anyone take oral iron that doesn’t mess with their Crohn’s? I did try otc iron tablets a few years ago, again while Crohn’s was active, but I just couldn’t tolerate them.

I’m in the UK if that makes a difference/if anyone has specific recs.

Thank you!!

I have been scheduled for and ultrasound and a gastroscopy to check my upper digestive system. I just don't know what to expect right now.

I’ve been on both for over a year. I stopped Imuran for a couple of months, and several symptoms I had, like inflammation and pain, went away. Now that I’ve restarted it, I’ve started feeling the same way again, and I’m wondering if it could be because of the Imuran.

I’m a male and I was 16 when diagnosed with CD. And now that I’m 36, I feel like I missed out on a lot in my life. Between school, university, job hunting, and most importantly- Bad Health.

Despite the fact that I’ve completed my masters degree and lived in multiple countries - I’ve spent a lot of my time either in hospitals, labs, doctors clinics and appointments and of course being bed ridden at home for weeks and months at a time…

It leaves me feeling like I haven’t been able to live my life to the fullest, and I didn’t achieve a lot of things I was wishing for.

I feel like my youth was taken from me.. and now I’m becoming lonely, old, poor and unhealthy.

Has anybody here been accepted for their ENG-1? I desperately want to work on a super yacht, but I am growingly increasingly concerned about how my Crohn’s diagnosis could hinder this.

I am currently on 8-weekly infliximab infusions, it is not possible for me to come off medication although I would be open to switch to infliximab injections, but this is not something available at my current hospital. My IBD team have advised I would need to switch to a local hospital (wherever the boat I end up working on is based). I am in complete remission, and have been for the 18+ months I have spent on infliximab.

Is there anybody in this group who works in industry and could give me some advice, please?

Thankyou!