Does anyone else find that some months, if your UC symptoms have been a bit elevated, that in the day before your period is due you get really intense pelvic pain and pressure? The pain is in the same area (lower left quadrant) as where my most chronic inflammation is.
My family and I currently live in Austin TX but are considering a move out west. I'm a 32M with Crohn's Colitis that's well managed with medication seeking a place that will be hosting my IBD care for many years from now, as one of these locales is where we're looking to settle down long term.
I'm very happy with my current gastroenterologist and care here in Austin (Dr. Feagins at UT Medicine), so I'd like to continue seeing a gastro in a similar academic/teaching hospital setting.
From my research, in the Portland area OHSU seems to be the closest fit to what I'm after for IBD care. For the Seattle area, UW Medicine looks like the best bet for the setting I'm interested in.
US News & World Report's healthcare and hospital ratings put OHSU at #35 in the top 50 hospitals in the nation for gastroenterology and GI surgery care, while UW Medicine is not ranked. Newsweek's World's Best Specialized Hospitals 2027, gastroenterolgy list has UW Medicine ranked at 68 nationwide, and OHSU is not on that list, and Healthgrades' Specialty Excellence Awards (for gastroenterology) includes UW Medical Center and not OHSU.
OHSU seems to have more updated buildings and facilities, though UW Medicine is said to be breaking ground soon on some major projects as well.
All that being said, any PNW IBD enjoyers please feel free to chime in and share your experiences with either of these healthcare providers (or others in the area too!). I'm know we're all aware here of how personal and impactful our relationships with our respective healthcare apparatuses are. Thanks in advance!
After suffering with ulcerative colitis for 18 years I had a total colectomy in 2019. I had an ileostomy bag for about 9 months had my j-pouch surgery (emergency surgery when my small intestine was twisted causing a blockage). I just want to cry-I went through hell with this surgery and finally felt good for a couple of years and now I feel sick again and my doctor thinks I have Crohn’s. I just need to vent to someone who understands-thanks for listening. 😢
Bonjour à tous,
Ça va faire maintenant presque six ans qu’on m’a diagnostiqué une RC H donc là aujourd’hui j’ai 22 ans et j’avais 16 ans qu’on me la diagnostiqué et tout et aller très vite pour moi car un an plus tard à 17 ans, j’ai dû subir une ablation du colon car je ne réagissais aucun à traitement. J’ai eu une iléostomie pendant trois ans et pendant ces années là tout était stabilisé dans ma vie j’avais pas de symptômes et je pouvais manger ce que je voulais, mais après socialement pour des questions de regard sur moi-même et d’un confort personnel, j’ai décidé de franchir le pas et de subir une anastamose ileo anal, c’est-à-dire une ablation du rectum et une reconstruction d’un réservoir avec l’intestin grêle pour remplacer le rectum et qui est moins fonctionnel. Ça fait donc maintenant un an et demi que je vis avec ce nouveau réservoir et je vis plutôt bien, je vais à la selles entre deux et quatre fois par jour en moyenne, ni plus ni moins sachant que voilà je peux manger beaucoup de choses sans souci et et je mange beaucoup, mais j’ai une alimentation très saine ou j’évite les produits transformés le plus possible et j’avais plusieurs questions. La première, c’est que à même après j’ai du mal à évacuer les gaz, c’est-à-dire que quand je suis debout ou en position verticale, je suis incapable de sortir les gaz et le seul moyen que j’ai trouvé c’est de me mettre à l’horizontal et de lever une jambe parce que sinon je n’arrive pas à sortir les gaz et surtout, j’ai du mal à faire la différence entre gaz et selles. Ma deuxième question c’est est-ce que ça vous arrive aussi pour les gens qui ont subit la même opération d’avoir d’autres manifestations inflammatoires à d’autres endroits du corps exemple j’ai souvent des espèces de kyste qui qui pousse au niveau de l’arrêt des fesses au niveau des aisselles, mais qui s’en vont et qui reviennent, et j’ai également un gros problème de cuir chevelu avec démangeaisons et des pellicules. Donc je cherche un peu des témoignages pour savoir si d’autres gens ou ce genre de symptômes qu’elle est un peu la qualité de vie des gens après cette opération pour me comparer.
Après je sais également que mon histoire est particulière et peut intéresser beaucoup de gens et suscité beaucoup de questions. Donc si vous en avez n’hésitez pas à me les poser, je répondrai avec plaisir.
Merci de votre aide.
Hey folks, thought I'd land on something interesting here. What's the best tip you have for managing your UC, preventing flares, or just knowing your condition better?
It could be a specific food plan you did, or specific medication, or lifestyle change, anything!
Hi everyone. I’d like to hear from people who have been in a similar situation.
I have mild distal colitis/proctitis. At the moment I’m doing quite well clinically: usually one bowel movement a day, no blood, and no major urgency. My latest fecal calprotectin was around 100.
I currently take 3 g oral mesalamine (Pentasa) daily and 1 g mesalamine suppository daily. Rectal mesalamine clearly works for me. In fact, I was doing very well for about four months using 500 mg suppositories every other day. When I tried reducing them further to once every three days, symptoms gradually started coming back, so I went back to daily rectal treatment and improved again.
My gastroenterologist recently told me that if at some point I get tired of having to use suppositories long term, biologic/advanced therapy could be an option. He wasn’t saying that I need biologics now — more that it could be considered in the future because of the impact of lifelong rectal treatment on quality of life.
That surprised me a little because my disease is relatively mild and mesalamine works. So I’m curious about people with proctitis or very limited UC specifically:
Did any of you move to a biologic or another advanced therapy mainly because you were dependent on rectal mesalamine? Did it allow you to stop suppositories completely? Was it worth it in terms of quality of life and side effects, or would you rather have stayed on suppositories if they were working?
I’m not looking to change treatment based on Reddit — I’m just interested in real-life experiences before I discuss it further with my gastroenterologist.
Hi all!
I’m starting azathioprine this weekend after being on pentasa for around 7 months. It stopped working for me so my doctor has recommended I start on azathioprine.
I’ve heard a lot about the side effects and wondered if there was anything people have found to help ease them or things to watch out for in particular?
I’ve heard taking it before bed has helped people as they can sleep through the nausea; I’m also concerned about getting ill all of the time and if this is something I should be worried about at all?
Any first hand information will be greatly appreciated ❤️
Okay so this is my first time on a biologic I assume it’s normal because online it says most people don’t see results until after the loading doses are complete just seeing if anyone had a similar experience to me
I failed 40mg prednisone 150mg azathioprine and 4.8mg oral mesalamine by failed I mean did absolutely nothing for my symptoms I got my first entyvio infusion on September 22nd first two days after no change which I expected then from the 25th-29th I had no bleeding at all today the 30th the bleeding is back not as extreme but it’s there my next infusion is the 7th just curious if anyone went through like a similar on and off during the loading doses
I’ve just had my fourth Entyvio infusion. I’ve had UC for many years and finally decided to start biologics. I started in June with the loading doses, followed by infusions every eight weeks, but unfortunately I haven’t noticed any improvement yet. I was really hoping it would work, especially because I liked the idea of a treatment that’s more targeted to the gut. My GI has suggested switching biologics, and I’ll be seeing him again soon to discuss the next step. Before that, I’d love to hear from anyone who’s been on Entyvio. Did it start working for you around week 14, or even later, after little or no improvement initially? Thanks so much for sharing your experiences!
My body can take some serious punishment, but this disease has pushed me to my limits. In the last 6 years I've been diagnosed with various diseases, iron overload, lyme disease, severe covid that needed a hospital stay, I even had pneumonia for the first time ever last year, 5 months later I was diagnosed with severe pan colitis and nothing even comes close to being as bad as this. Nearly 12 months now since diagnosis, and my body is telling me I can't take any more.
It's not just the UC though....
It's the medication, it's also making me sick.
It's the lack of sleep.
It's the worry, about numerous things, but number 1 is how quick can I get to the toilet.
It's the cabin fever because you are confined to the house.
It's the constant harassment from my employer for not attending the office whilst flaring
It's the unsolicited suggestions for treatments and diets
It's the comparisons with IBS or just some food that doesn't agree with someone
It's the battling with the NHS for the right care
It's the feeling vulnerable when you are seriously ill. Something I have never felt before having UC.
It's the feeling alone, because no matter how much support you have, this is only something you can deal with and no one can actually begin to comprehend the effect it has on you.
Anyway, I will continue to fight on, I have a family to look after, so let's f'ing go 💪✊😁
Is fasting good for UC? I've been reading that it might help repair cells and aid healing, specifically a 72-hour fast. What do you think?
Hi everyone, I had a panic attack two days ago causing lots of chest tightness and panic and this chest tightness has lingered two days on. Now it also feels like a lump in my throat/chest feeling. I’m worried that because I take above the recommended dose of mesalazine it may be inflammation of my heart (I take 6g daily of mesalazine and have done so for most of this year on doctors advice). Could it be the anxiety lingering or heart inflammation? I don’t know how to differentiate.
im so fed up with this disease bro. i literally cannot trust my own body atp. i was completely fine a week ago on my daily dose of mesalamine suppositories yet this fucking disease decided to flare up AGAIN as if i did smth to piss it off. im already dealing w a bit of mental health issues ( not caused but definitely worsened cuz of this disease ) AND IT JUST HAD TO FLARE UP AGAIN. also how am i shitting this much bro i do NOT remember even consuming this much amount of food its like they're creating bloody poop out of nowhere in my gut bro AND to worsen it all ive tried so hard finding someone irl who also suffers from an ibd like at my university just so i have someone to relate with and talk about this with but like since its kinda rare and pretty much an invisible disease its so fucking hard to do so.
Should I take protein powder, bcoz my protein intake is roughly 20-25gm per day.
Body weight - 50, Age -20 , Height - 5.7ft
I’ve been on Tremfya for 2 months now. 2 injections every 28 days. I feel better for 14 days after my injection then get loose stools but no blood. I’m losing a lot of hair and I’m scared. Is there anybody else on Tremfya who has experienced this