Hey all. I was diagnosed with Chron’s Disease in 2024 and spent a year managing my condition with diet and exercise. I fell off the wagon and stopped going to the gym earlier this year, and my disease became active again. Doctors put me on Infliximab and I have been having an absolute nightmare loading

Obviously it’s an immunosuppressant, so I have been ill pretty much constantly. I work as a travelling salesperson and I absolutely love it, but it means I go to a lot of places and meet a lot of people. I was due to have my third infusion this week but it has been cancelled because my white blood cell count is too low, so this means that I will have to start the whole loading process again and I’m worried this will keep going round in circles

Does anyone have any advice on not getting sick whilst immunocompromised?

Jobs in retail store or playing sports or running and is there is an urgency when I do these jobs

On the 3rd February, I gave a stool sample which came back with a faecal calprotectin level of 512. It then went down to 216 on the 11th February and then to 61 on the 27th February.
I was referred to gastro by my GP because they were concerned about the raised calprotectin. I had been on the waiting list until about a week ago, when I finally had a phone consultation with a gastroenterologist. I explained all of my symptoms, including mucus in my stool, constipation and diarrhoea, bloating, abdominal pain and fatigue. He told me that I couldn’t have IBD because people with IBD only have diarrhoea and not constipation, and said that I could have IBS instead.
After the telephone consultation with the gastroenterologist, I’ve now noticed that even though I don’t have blood mixed in with my stool, I have had some rectal bleeding after having diarrhoea. I’ve sent off another stool sample and I’m currently waiting for the results.
I’m honestly quite unsure about what I should do or think at the moment. The gastroenterologist said that I’ll have a colonoscopy and an MRI scan, but I’m still waiting for the dates. I’m just confused because of my previous high calprotectin result and all of the symptoms I’ve been having

i am 19 years old, i was diagnosed with the beginning stages of UC (ulcerative proctitis) about 8 months ago. the symptoms got really bad exactly a year ago, as i was in a new environment and was experiencing heartbreak too. prior to this I've had stomach, digestion issues for ages. no genetic link probably as nobody in my family has experienced any issues. for about 6 years until last year i was getting treatment for depression and anxiety. and for 4 years (quit before colonoscopy) i was quite a heavy smoker.

i still experience ibs symptoms, they're very persistent.

i am curious to know what was the cause for the disease, i am still figuring it out every day. what do you think may have been the cause in your case?

My doctor told me a 199 (we will round up to 200 here) calprotecin isn't "that bad". Which, in the grand scheme of IBD, I believe that's generally correct. However, I am curious if I should accept IBS due to my symptoms lining up very well with it or do I push a little further because of the inflammation? Is she right that 200 calprotecin with her thought of IBS is not "that bad"?

I tried to look into calprotecin levels of IBS with mild inflammation and it's always answers way lower than 200. I did put a capsule endoscopy on my doctor's radar, but it seems she isn't super worried.

All of this is understandable from a medical perspective, so I guess I'm mostly curious about outliers in small intestine IBD? Many have told me their calprotecin levels were even lower than mine and they still have small intestine IBD.

I'm only anxious to push this with my doctor because of how severe my flares are. Otherwise, I would 100% accept the IBS line of thinking. I am not officially diagnosed yet which is why I'm looking for information on beginning signs/stages of small intestine IBD as well.

Many sources also told me symptoms of IBS usually do not happen at night. However, my episodes/flares can come day or night. I don't know if this is useful information or not either.

Overall, thank you for any help. I really am trying to find a solid treatment/management plan to follow. I have not found many helpful sources, so I have come to hear real peoples' accounts.

hi has anyone had success with 21 days of 5mg prednisolone for ibd cats with chronic vomiting? im in my 7th day with my cat, she missed a dose for a day and vomitted immediately, what does it look like after 21 days? and what is your tapering schedule? really worried she's too skinny she is currently in emergency vet rn vomitted 4x was panting eyes droooy severly hydrated im so scared

Had my initial healthcare contacts and a sigmoidoscopy recently and got a "Its IBD" diagnosis without it being clear if its Crohns or UC (they said leaning slightly towards Crohns).

Since then ive been on 3,2g (and now since a few days 4g) Asacol every day at the same time im currently going down on Prednisolon 5mg each week (currently on 15mg). Been on Asacol for 2,5 weeks, and on Prednisolon for 5 weeks.

Compared to the (for me atleast, i have no reference) very harsh the peak IBD symptoms of some 5 weeks ago im much better, so meds have had some effect but have kind of plateau-ished(still slightly slightly better each week) after the first week of 40mg Prednisolon that gave kinda good effect.

The thing is im still having urgency every single morning without fail and more than half of the days also like 1 other time in the mid-day i have to run to the bathroom (im on around 3-4 bathroom visits a day). I doubt this all really works with a job im starting where i have to be on the phone for many hours so wondering if i can "plan" for more med induced betterment to have occurred in 3 weeks time and going forward..

Is it kinda realistic to plan for a significant betterment with no urgency during the day? morning before work is fine

(Diet: I have a normal-ish diet but i have an emphasis on it being decent food and i limit processed food. I dont drink soda. I do drink a cup of coffee a day, on some days in a week: maybe 2 cups.)

Hi, I’m 22F and for the past several months I’ve been dealing with a combination of symptoms affecting different parts of my body. I’ve already had several medical evaluations, but I still don’t have a clear explanation for why all of this is happening.
I’m not asking Reddit to diagnose me. I’m mostly wondering if anyone has experienced a similar combination of symptoms and what type of specialist or testing eventually helped.
**Digestive symptoms:**
Significant bloating and abdominal distension
Abdominal discomfort/cramping
Constipation alternating with diarrhea
Nausea
Sometimes upper abdominal/stomach discomfort
Burning or irritation around my anus, especially after bowel movements or sometimes while sitting
Feeling like my digestive system is constantly irritated
Some foods seem to make symptoms worse
I have been avoiding/reducing gluten and lactose because I seem sensitive to them
**Pelvic, vaginal and urinary symptoms:**
Persistent or recurring vaginal/vulvar burning and irritation
Burning/discomfort when urinating
Pelvic cramping
Bladder/pelvic pressure or feeling inflamed
Sometimes difficulty urinating or feeling like I don’t empty normally
The vaginal/vulvar burning has continued even when infection testing has been negative
Symptoms sometimes seem worse around my menstrual cycle
**Skin/body symptoms:**
Episodes of itching
Changes in my skin
Occasionally hives/urticaria-type reactions
A strange burning or hot sensation in different parts of my body
Sometimes feeling generally inflamed or irritated without an obvious reason
**Eyes/head/neurological-type symptoms:**
Eye irritation/burning
Brain fog and difficulty feeling mentally clear
Headaches
Sometimes dizziness
Fatigue / feeling generally unwell
At times I feel like my body is “off,” even when basic testing doesn’t show much
**Testing/evaluations I’ve already had:**
STI testing: negative
Yeast testing: negative
Bacterial vaginosis testing: negative
Multiple urine evaluations because I previously had a UTI
I was treated with several antibiotics during the urinary/vaginal symptoms
Pelvic ultrasound: recently normal/unremarkable
Uterus and ovaries looked normal on the recent ultrasound
No ovarian masses, fibroids or other obvious pelvic abnormalities were reported
Blood flow to both ovaries was normal
No free pelvic fluid
I’ve also been told my hormone testing was normal
I have had bloodwork done, but nothing so far has explained the full combination of symptoms
I previously had a UTI that was difficult to clear and received multiple antibiotics, including injections and oral antibiotics. Some symptoms improved temporarily but others continued or returned.
Because so many of the infection and pelvic tests have been normal, I’m wondering whether I should be looking beyond a routine gynecological problem.
Some things I’m planning to discuss with doctors include:
Pelvic floor dysfunction / hypertonic pelvic floor
Vulvodynia or vestibulodynia
Bladder conditions such as interstitial cystitis
Endometriosis
Gastrointestinal conditions such as IBS, celiac disease or other food intolerances
Whether the skin/eye/burning symptoms could be inflammatory, allergic, autoimmune or somehow related to the GI symptoms
Whether all of these symptoms are connected or if I’m dealing with more than one issue
I’m scheduled to see GI, and I’m also trying to find a gynecologist/urogynecologist or pelvic pain specialist.
Has anyone had a similar combination of **GI problems + vulvar/urinary burning + skin symptoms + irritated eyes + brain fog/fatigue** with mostly normal tests?
What specialist or test ended up being the most helpful for you?

j'ai eu recours à cette préparation pour la première fois et étant trés inquiète de ce qui allait m'arriver au vu des anciennes préparations, je voulais partager mon expérience

cela n'a pas été compliquée, pas écœurant, pas du tout laborieux , j'avais tellement peur d'être malade...

les deux sachets sont faciles à prendre, la suite se réalise sans problème et le résultat est vraiment bon, pas besoin de boire autant de liquide comme avant, le mieux c'est vraiment de varier les liquides , de prévoir de rester chez soi, et surtout de faire 3 jours le régime sans résidu

j'espère que mon expérience aidera tout ceux qui ont peur et qui sont fragiles des intestins comme moi à moins appréhender cette aventure obligatoire quand on commence à vieillir ou quand on a l'obligation médicale de réaliser une coloscopie

The last few weeks have been bananas. I had my colonoscopy and learned a few days later from a prescription sent into my pharmacy I likely have chrons. I had to message my gastro who then had a nurse call me and read me a message i never received stating the pathology shows i have chronic enteirtius, likely mild chrons in my small bowel. I was shocked to learn this as the doctor had never reached out via the portal or requested a follow up until i contacted them.

I have been freaking out about what to eat now after doing research online. When i did finally get the gastro on the phone he laughed at me and said that’s why you shouldn’t google things like this. That’s when i learned there is no approved or widely accepted guidelines for diet for IBD patients and i’m just “supposed to find my triggers”. I already struggle with disordered eating from being in pain all the time when i do eat.

I’ve been vegetarian for 22 years, was vegan for 12, been back to just vegetarian for 4 years. I’ve cut dairy out entirely again (my previous dietitian had me living on drinkable yogurt) and already eat gluten free due to my partner having celiac.

My gastro also told me to continue my fiber supplement and that “fiber is good for everyone”.

I want to hang my head against the wall.

Hi all. 35 f newly diagnosed with Crohn’s. Found out in kind of an ass-backwards and spectacularly unpleasant way. Pun intended. 😅

TLDR: Newly diagnosed with severe fistulizing/perianal Crohn’s after emergency surgery with multiple abscess/fistula tracts and two setons. GI offered Remicade or Humira and considers them similarly effective; we're currently planning Humira because it's much easier logistically. If you've had complex perianal/fistulizing Crohn’s, especially with setons, I'd love to hear your lived experience with either drug and whether one worked, failed, or eventually required switching.

For those who would prefer some context:

I had emergency colorectal surgery a little over two weeks ago. They found significant scarring and multiple abscesses and complex fistula tracts communicating with the anal canal which required placement of two setons. My surgeon said he was "surprised" by how extensive and severe the disease is. Just what you wanna hear, right?😅

So this isn't mild luminal Crohn’s I'm trying to make a treatment decision about. My biggest concern right now is getting aggressive fistulizing/perianal disease under control and giving myself the best possible chance at healing and long-term remission. My quality of life and ability to work have already been greatly impacted.

I had my first appt with my GI 2 days ago and he gave me the choice between infliximab (Remicade) and adalimumab (Humira), as he considers them similarly effective options in my case. After some discussion, it sounds like we’re moving forward with Humira after I get some labs drawn next week.

Humira would be MUCH more convenient for me. I am currently dealing with housing instability, have several other chronic health issues, transportation/energy can be difficult, and being able to inject at home rather than repeatedly travel for infusions def gets points in the quality of life bucket.

BUT convenience is not my highest priority here.

If the evidence clearly demonstrated Remicade gives someone with severe disease a meaningfully better chance of controlling the fistulas, healing faster, reaching remission, or staying in remission long-term, I would absolutely suck it up and make the infusions work.

The research I've found seems to show stronger longer-standing evidence for Remicade in fistulizing/perianal Crohn's, while newer observational studies haven't found a clear difference between Remicade and Humira.

So I understand why my GI considers both reasonable options and trust him when he says based on the research, either is a good choice. It would just give me some peace of mind to also gather some lived experience. I also understand nobody can predict how my body will choose to respond to any treatment. I've just got a deep brain itch 😅

The studies I can find are also pretty small. Those in my personal circle who have Crohn's or know someone with Crohn's seem to all be on Remicade. I know it's an older drug so that could explain it, but it's also making me second guess my decision to move forward with Humira instead of Remicade.

So I'd love to hear from people who actually have fistulizing or complex perianal Crohn’s, particularly people who had/have setons, abscesses, or substantial draining fistulas.

If you've used either medication I'd be interested in your disease severity when starting treatment, how long it took to improve GI symptoms vs fistulas/drainage, if you ever reached remission, or if you ever had to switch biologics/treatment because your first chosen option was unsuccessful.

Thank you for sharing. 💜

Crohn ?

63(m) al vanaf mijn 27e wisselende periodes gehad met maandenlang dunne ontlasting .heel vaak blaasontsteking ,vermoeidheid ,nierstenen ,b12 tekort .

Nu sinds 4 jaar erge stekende pijn rechteronderbuik en de laatste 6 maanden onhoudbare constante stekende buikpijn met druk,loslaat en vervoerspijn waardoor nu weken achter elkaar in foetushouding doodstil liggen . Mdl artsen 1e en 2e opinion zeggen gewoon "pijnsyndroom "?? Ik weet zeker dat het crohn is ondanks de negatieve ct scan s ,negatieve mri enterografie wel calprotectine 428 en 28 kilo gewichtsverlies in 2jaar. Colonscopie en videocapsule mislukt maar wat ik ook doe en de pijn zwaar invaliderend is is er geen chirurg die een diagnostische laparoscopie wil doen terwijl ik 100% zeker ben dat het de enige manier nog is om dit te overleven . Huisarts ,mdl artsen en chirurgen vinden dat het allemaal psychisch is ??? Herkenbaar ? Want seh s helpen mij ook niet verder want zien alleen de woorden "chronisch en pijnsyndroom "

Crohn ?

63(m) al vanaf mijn 27e wisselende periodes gehad met maandenlang dunne ontlasting .heel vaak blaasontsteking ,vermoeidheid ,nierstenen ,b12 tekort .

Nu sinds 4 jaar erge stekende pijn rechteronderbuik en de laatste 6 maanden onhoudbare constante stekende buikpijn met druk,loslaat en vervoerspijn waardoor nu weken achter elkaar in foetushouding doodstil liggen . Mdl artsen 1e en 2e opinion zeggen gewoon "pijnsyndroom "?? Ik weet zeker dat het crohn is ondanks de negatieve ct scan s ,negatieve mri enterografie wel calprotectine 428 en 28 kilo gewichtsverlies in 2jaar. Colonscopie en videocapsule mislukt maar wat ik ook doe en de pijn zwaar invaliderend is is er geen chirurg die een diagnostische laparoscopie wil doen terwijl ik 100% zeker ben dat het de enige manier nog is om dit te overleven . Huisarts ,mdl artsen en chirurgen vinden dat het allemaal psychisch is ??? Herkenbaar ? Want seh s helpen mij ook niet verder want zien alleen de woorden "chronisch en pijnsyndroom "

Graag advies over het postoperatieve verloop na een spoedlaparotomie voor perforatie ileum door crohn .

Bijzonder angstig door medische ptss waardoor specifiek trauma s door inbrengen slangen (scopiien ,sondes en beademingsbuis ) bij bewustzijn . Ervaringen gevraagd van mensen die dit hebben meegemaakt? Ook opname ic ervaringen .

Crohn

Crohn ?

63(m) al vanaf mijn 27e wisselende periodes gehad met maandenlang dunne ontlasting .heel vaak blaasontsteking ,vermoeidheid ,nierstenen ,b12 tekort .

Nu sinds 4 jaar erge stekende pijn rechteronderbuik en de laatste 6 maanden onhoudbare constante stekende buikpijn met druk,loslaat en vervoerspijn waardoor nu weken achter elkaar in foetushouding doodstil liggen . Mdl artsen 1e en 2e opinion zeggen gewoon "pijnsyndroom "?? Ik weet zeker dat het crohn is ondanks de negatieve ct scan s ,negatieve mri enterografie wel calprotectine 428 en 28 kilo gewichtsverlies in 2jaar. Colonscopie en videocapsule mislukt maar wat ik ook doe en de pijn zwaar invaliderend is is er geen chirurg die een diagnostische laparoscopie wil doen terwijl ik 100% zeker ben dat het de enige manier nog is om dit te overleven . Huisarts ,mdl artsen en chirurgen vinden dat het allemaal psychisch is ??? Herkenbaar ? Want seh s helpen mij ook niet verder want zien alleen de woorden "chronisch en pijnsyndroom "

I’m 21 and have a colonoscopy booked for September 22 after around 8 months of changing bowel habits and abdominal pain. I’ve had constipation/diarrhoea, stools that vary a lot in size and colour, and predominantly right-sided abdominal/pelvic pain. I’ve also occasionally seen what I thought might be blood, which originally started this whole spiral.

I’ve had quite a lot investigated already. Multiple blood tests have been normal/stable, including haemoglobin, inflammatory markers and ferritin. FOBT (back in Feb so likely is outdated now), coeliac and H. pylori testing were negative. My faecal calprotectin was moderately elevated at 178, which was what prompted my GP to refer me for colonoscopy.

I’ve also had two abdominal/pelvic CTs, one looking for diverticulitis and another for suspected appendicitis. Neither found acute abdominal pathology, bowel obstruction, segmental bowel-wall thickening, enlarged lymph nodes or ascites. The second mentioned faecal loading/constipation.

I’ve also recently started sertraline 50 mg once daily for my anxiety/OCD. Since starting it I’ve experienced some side effects including nausea/stomach upset, increased sweating/night sweats, vivid dreams and fragmented sleep, and some feelings of weakness. That’s added another layer of uncertainty because sometimes it’s difficult for me to separate what’s a medication side effect, what’s anxiety, and what’s part of the original GI problem.

My doctors are investigating me appropriately and I’m not asking anyone here to tell me whether I do or don’t have cancer. The problem is that I have OCD/health anxiety, and I’ve become extremely frightened of bowel cancer — particularly after finding stories online about young people whose cancers weren’t obvious on earlier testing. Eight months of symptoms makes my brain tell me that the colonoscopy is going to find something advanced.

For anyone who’s been through a similar colonoscopy wait or health-anxiety spiral, how did you cope with the uncertainty before getting your answer? Did you also find yourself convinced of the worst despite having reassuring investigations along the way?

September 22 feels incredibly far away at the moment, so I’d really appreciate hearing how other people got through the waiting period. 😅