r/UlcerativeColitis

I really struggle to identify what foods I have problems with. I've had proctitis/colitis for over 6 years and I couldn't tell you if my diet is affecting how I am day to day or in a flare at all. There doesn't seem to be any sort of pattern, or if there is I'm terrible at working it out. But could this be because my inflammation has mostly been limited to the very end of my bowel except for during a couple of bad flares? Does diet have a lesser impact on things overall when it's confined to this area? Or would you still expect diet to play a part?

Thanks!

I started Entyvio last week and at the same time dropped Cortiment (Budesonid oral) to every second day and I‘ve been feeling like absolut shit.

For months I am in the worst flare i ever had and Prednisolon did nothing to me that’s why I started Cortiment. But know I have pains, 5 movements a day, my whole body constantly hurts (get that with bad flairs) and I’m super tired and not sure if it’s my flare coming back or side effects of Entyvio? i sent my GI an email still waiting for an answer so I wanted to ask if anyone has experienced something similar.

Really can’t do this disease no more, everything is just an effort and just leaving the house let’s me anxiously looking up the next bathroom…

Hola a todos!

Soy nueva en reddit y también en el mundo de los problemas gastrointestinales. Vengo en búsqueda de algún consejo, orientación o experiencia que me pueda ayudar a transitar este momento.

Tengo 33 años y hasta enero de este año tenía una vida normal y muy activa, con mucho deporte. De un día al otro empecé con malestar estomacal, tranquilo, pensé que algo le había caído mal. Y después... Llegó. Comencé a tener una diarrea muy fuerte. Iba al baño 20 veces o más por día. En ese momento fui a la guardia dos veces de lo deshidratada que estaba y me pasaron suero. Se lo atribuían a alguna gastroenteritis y que se iría en 7/10 días. No se fue, así que tuve que ir al gastro. Ahí me recetaron rifaximina y otro antiespasmódico. Tampoco meioro de inmediato y continúe así varias semanas más. Con el tiempo fue bajando la cantidad de veces que iba al baño, pero la diarrea continuaba. Entonces me pidieron una endoscopia/colonoscopia. Dudaba si hacérmela porque ya no tenía síntomas tan intensos. La obra social me la cubrió y me la hice. Salió inflamación desde el recto hasta 40 cm, pero no sé pudo completar por intestino tortuoso (?). De todas formas, la biopsia descartó patologías.

Dado todo esto, la gasto medio que me dejó a mí suerte y me indicó solo una pastilla para cuando estuviese muy inflamada, porque yo le decía que todavía seguía haciendo diarrea aunque entre 3/6 veces por día y mucha hinchazón sin poder atribuírselo a algún alimento o situación específica.

Como no quería vivir sujeta a una pastilla para la inflamación, hice una consulta con un gastro especialista en trastornos funcionales. Pero está gastro me dijo que en realidad me faltaban estudios para descartar algo orgánico, como un examen de calprotecnia, elastasa y posiblemente una tomografía o en el mejor de los casos, si la obra social lo permitía, repetir la colonoscopia y ver si se podía completar porque ella sospechaba que podía ser colitis ulcerosa. Principalmente por la inflamación que se había visto en la primera, porque continuaba con diarrea y también presentaba anemia.

Esto último fue hace una semana y aunque no muy convencida pensé en ir haciendo los estudios con tiempo... Total no estaba tan mal y estaba pudiendo entrenar y organizar mi vida más o menos ya que no tenía tanta urgencia. PERO, así de la nada, otra vez, la urgencia volvió, la frecuencia volvió y ahora estoy yendo más de 20 veces al baño de forma diaria, con dolor y sangre abundante (aunque en la primera colonoscopia también se vieron hemorroides internas). A la noche me puedo levantar cada una o dos horas, a veces para hacer solo sangre y mucosidad.

Fui de urgencia a la primera gastro para comentarle lo que me está pasando, pero me dijo que para ella no son episodios vinculados porque había mejorado y apunta a que estoy muy nerviosa, aunque yo no siento que sea así. En todo caso lo que me pone nerviosa ahora es no poder salir ni a comprar porque la urgencia es fatal. Así que me dió otra ronda de rifaximina y un antiespasmódico para ver si mejora :/

Ya no sé qué pensar ni como seguir. No sé a qué profesional creerle y mientras tanto estuve toda esta semana de licencia en el trabajo porque tengo que viajar dos horas hasta mi lugar de trabajo y tampoco puedo acceder al baño cuando quiera estando en el aula (soy profe). Mi vida parece suspendida otra vez y ni siquiera tengo la perspectiva de cuando se me va a pasar esto porque la otra vez, en enero, tardó un par de semanas.

Si llegaste hasta acá te agradezco la lectura y cualquier consejo que me puedas dar. Abrazo 🤗

I had my fourth dose of Entyvio on Monday. Today (Thursday), I woke up at 3 am feeling unwell. I started vomiting and had a high temperature, which came out of nowhere. Twelve hours later, I am
not vomiting anymore, but I still have a high temperature. I’m curious if this was just a virus or if it’s related to Entyvio.

Does anyone have any tips on managing the pain when administering the infliximab pen? I have to do it every 2 weeks and i'm now at the point where I'm crying in pain when it's happening. I've tried leaving it out of the fridge for an hour before injecting, changing from my stomach to my thigh, and asking my partner to do the injection, and it's still horrible. Is this the price you have to pay to manage your shit?

I'd prefer to manage the pain for the few seconds it lasts rather than have regular infusions at the hospital, but if I can't get it under control then maybe it's the only option I have.

Any suggestions welcome, but be nice please, I'm still sore from the injection!

I’m 10 months in on rinvoq now and I didn’t get told about the shingles vaccine before starting rinvoq, I got told around novemeber that I will be getting it and on the day of app they rang and cancelled because not enough supplies.

Should I chase them up about it? I’m reading a few things about needing it whilst on rinvoq but just wondering why they never gave another app or even pushing me to get it at the gp

Hi all!

Onto month two of UC, and the 1 4g enema seems to have helped but not push my (mild) proctitis into remission, still having liquidy stools and some symptoms, so yesterday my GI increased me to 4g enema + x4 1.2g oral Mesalamine.

He said to call him if it doesn’t reduce my symptoms almost completely in a few weeks.

My question is:

Has anyone else had experience with high doses like this? Any problems short or long term?

If this doesn’t work, what is typically the next step(s)?

Do any of you get tattoos and have negative reactions? Doctor warned that 1-10% of UC patients have higher risk for pyoderma gangrenosum and a tattoo could trigger that. Thoughts?

Thanks all!

I (F25) was diagnosed with UC four weeks ago, and by standard procedure they take samples from your colon. I was called one week ago to be told that my tests had disappeared, so the tests were never analyzed. They told me that i could choose whether i wanted a new colonoscopy or not, but my doctor said it wasn’t really necessary because the UC was visible. Note: my medication is working.

I’m freaking out. 1. because the prep was horrible. 2. because what if there are cancerous cells or something? They do these tests for good reason, right?? 3. i’m afraid i’ll regret NOT doing it for my own sanity.

Anyway, i want advice on whether i should do this test again or not. Convince me or don’t convince me. Thanks!!

21 year old with c diff and colitis getting worse again on antibiotics should I be concerned 😟 and I can’t get in to my doctors until next Thursday

Hi guys.

I was diagnosed a few years ago, doc put me on mesalazine tablets no clue on the dose but it was 4 big ones a day, for mild-medium proctitis combined with uc a little further up, whatever that’s called…. worked alright, then my symptoms got considerably worse to the point of being hospitalised from the pain. Plus lots and lots of blood, mucus and lots of time on the toilet

Doctor refused to listen to anything I said and kept pushing to stay on it. Being 18 at the time I cracked the shits and stopped it by myself. All symptoms went away a few weeks after stopping and I just did my own thing for 3 years un-medicated with only a few mild flare ups here and there.

A few weeks ago I had a bad flare up and decided my luck had run out and it’s time to be a grown up and sort it out.
I found a new doctor who seemed rly nice, and discussed the past intolerance, which she said we’ll write mesalazine off and try something else. Great!

Had a procedure booked but my insurance bailed so while I’m waiting for the public system, doc has prescribed enemas (which are absolutely horrible btw) to see how I go for a week.

Much to my dismay, they are mesalazine enemas, :(
Idk if my doc forgot or made a mistake or what, but on the same day it was prescribed, she noted my intolerance in a note to my gp… so yeah. Pretty grumpy about that.

Now by the time I got the prescription, the flare up had died down to mild discomfort. But after the first night with the enemas, within 20min I had mild cramping and aching which got worse the next day with increased blood. But same amount of bowel movements. Had to leave work and see a gp.

My question is, has anyone else had a negative reaction to mesalazine this quick?

Is it happening so soon because of my intolerance in the past or could it just be the disease doing its thing?

I don’t want to put myself through the same pain as last time, so gp and I decided to stop all together and book a follow up with the specialist.

Ig I’ll know in the next few days, if these new symptoms go away or not.

Cheers
-having uc is shit :(

So I was diagnosed a couple of months ago, and the NHS have been slow and not very clear in their communication with me. I was told through a letter that I was being prescribed 2g oral Pentasa (Mesalazine) daily.

After I finally managed to wrangle my GP into actually giving me the prescription, I have now started on the medication. (Still haven't heard anything from the IBD clinic mentioned in the letter).

What I'm worried about after being in this subreddit for a couple months, is that I've ONLY been given Mesalazine in oral tablet form, not as an enima as well. It seems like a lot of people use both types to actually get a good effect from the medication.

Have I been set up for failure with this medication? I know it takes a while for it to hypothetically work, but maybe its not going to be effective in just tablet form on its own.

*edit as I got mixed up with mg and g, it is 2g of pentasa I'm on

Starting rinvoq tomorrow. I’m already on entyvio and they’re adding rinvoq because entyvio isn’t enough on its own. Anything I should know for side effects, etc? I always get nervous starting a new med

Has anyone noticed that how food is cooked affects symptoms more than the food itself?

I’m not talking about good foods vs bad foods, just the cooking method.

I've done a quick search in this group, and deep-fried foods have been talked about a lot, and seem to be problematic for many. In general, these haven't caused issues for me when eaten infrequently. But pan fried? I get symptoms the next day.

No issues with butter on toast, or oil in dressings.

I’ve been on biologics and doing pretty well for a while. For convenience I was using Lite n’ Easy (if you’re outside Australia, it’s similar to Jenny Craig — portion‑controlled meals, mostly microwave, very little actual cooking).

During that time things were really stable.

Recently I went back to pan fried dinners (mostly meat and 3 veg) and symptoms have crept back in.

I can’t find much research on cooking methods and UC, but I’m starting to wonder whether pan‑frying might be the culprit.

Not saying this is universal or a rule. Just curious whether anyone else has noticed differences between microwave/airfryer/boiled/baked vs pan‑fried foods.

For starters, I dont have qualifications for remote work of any kind which sucks.

Right now I work at a Starbucks kiosk in a grocery store. Ive been showing signs of flaring and I haven't been doing great so my boss was kind enough to just give me one day this week so I could rest.

Knowing that, I need to do well this one shift. However, I've barely been here an hour and I've already spent more time in the bathroom. I literally have to drop what im doing and run there every ten minutes. My coworker also just left and I'm alone for hopefully only an hour before the new girl shows up (I have low hopes though since she no called no showed yesterday)

Guess im finally biting the bullet this afternoon and filing for disability because my remission lasted less than 3 months and my last flare up lasted over a year.

I hate this disease and everything its taken from me

I’m seeing this is being reported as a side effect of the drug on forums .. but Studies have not really reported it !

Interested to know !

Hey everyone, my doctor is about to start me on Ustekinumab (Stelara) and I've been thinking about getting a tattoo. Has anyone here gotten inked while on this treatment?

Two specific questions:

1. How long did you wait (or were you advised to wait) after starting before getting tattooed?
2. Does the size of the piece matter? Like, is a small tattoo relatively safe, or is a full arm sleeve a completely different risk level?

My doctor hasn't given me a hard no, but I want to hear from people with real experience before I bring it up more seriously. Any advice appreciated!

Im really curious how many of you are able to do heavy workouts in remission and not get into flare.

I want to start working out again after i got into remission, but i must say im just scared it will knock me into flare again.

Im planning to lose weight and support it by running. Also gym is in my mind, and so i would do moderate workouts maybe 3-4x /week.

I know everyone is different but still i wanna hear something that gives me hope. I really like to do heavy workouts, but if i must make compromise on than so be it.

I’m sure this is something lots of people experience but it just pisses me off so much!! I’ve only recently been diagnosed with UC, i’m 19 and live with my parents and siblings - I have to spend so much money on whole foods, pay top dollar for the only food my body will tolerate and people just eat it on you. It doesn’t matter how many times I remind them. They see a fresh loaf of sourdough and just go crazy, the few cuts of poultry and vegetables I can eat - gone. Guess I’m not eating then! They can literally eat whatever they want with no restrictions, but they MUST eat the only options I have. It’s so frustrating idk, i gotta start writing my name in sharpie on everything I buy or get a fridge for my bedroom atp. the amount of times i’ve gone hungry because someone has eaten the last of the few foods I can tolerate. If you didn’t buy it and it’s magically appeared on the counter, maybe ASK before you help yourself. Sorry for the annoying vent, I just wish people were more respectful.

I was set do my first yesintek injection in a few weeks and my infusion clinic set up a training for me next week so I ordered it at the pharmacy, was told that it would have to get approved by my insurance. Thats cool, no worries. Today I get told my insurance denied it and is requesting alternative medication for me🙄 now we wait to see what the pharmacist and my GI come up with and how to proceed

Apologies if this question is already somewhere else! I’ve been suffering with UC for years and generally I am quite good at controlling it. I’m starting to worry about long term side effects of the disease and meds I take (azaphioprine, mezalazine etc.). Is there anything that anyone knows of I can be doing? Exercise and diet wise (for example, yoga to offset arthritis/osteoperosis etc.). Thanks!