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What has been your UC journey?

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Ulcerative Colitis
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Posted 10/20/2020 12:41 PM (GMT -6)
Hi all,

This is my first post here!

Firstly, a little bit about myself, I'm 31 and I was diagnosed with UC 4 years ago - I now have left-sided (distal) colitis and have luckily only had a couple of major flare-ups since my diagnosis and they were around a year apart.

My Gastro consultant is quite relaxed about it and says that I don't need to worry about changing my diet and that there are lots of treatment options now but that's easy to say if you don't have it yourself!

After reading various posts on here, and seeing how disruptive UC can be, I wanted to get your thoughts on it and how it is to live with especially after living with it for longer.

Has the coverage increased over time and has the frequency between flare ups increased as you get older? If so, how do you manage and do you have any tips for prevention?

Thanks in advance!
Posted 10/20/2020 3:38 PM (GMT -6)
I've had my UC for about 15 years now. Took about a year to diagnose as my GP was an asshat. I would flare about every 6 months and it would take almost 6 months to get over it. I think I've been on most meds. I had the most success with Imuran, but then broke through it. Did a short stint on Humera...broke through that. Now been on Remicade for a few years and have not flared yet! Stress is my main flare trigger. So if I manage that, I'm ok. I eat whatever I want. I just need to watch raw veggies (I LOVE salad...but it doesn't always like me!) Gives me mainly cramping and pain. I think I have pancolitis? (all the way through my large intestine). I'm very stubborn, so I look at this as an inconvenience. I try to not let it ruin my life. I just keep going smile
Posted 10/21/2020 4:27 AM (GMT -6)
Thanks for sharing Fullcheek!

I had a similar problem with my GP - I'd like to think that I could've limited it to a much smaller area if he didn't waste so much time with the likes of fybogel and suppositories that didn't work.

Was it always pancolitis or did it start at the base of the colon and extend?

When you say you broke through the medication does that mean that your immune system because immune to it?
Posted 10/21/2020 6:05 AM (GMT -6)
I was diagnosed with pancolitis from the beginning. My flare started very suddenly (like food poisoning) and was diagnosed quickly due to obvious symptoms (20+ bowel movements a day, lots of blood)
It later evolved into left sided colitis and then proctitis as meds worked partially. Touch wood have been in remission over a year.
I'm not really a believer in "I was diagnosed with left sided colitis therefore I don't have pancolitis" Most UCers are in the situation that inflammation starts at the rectum and spreads upwards; likewise healing starts at the other end of the colon and the rectum is the last place to heal. Keeping the inflammation under control prevents it from spreading but it's not like an on/off button between proctitis and left sided colitis
Posted 10/21/2020 7:26 AM (GMT -6)
Expect the unexpected as the prognosis of an UC is wildly unpredictable especially within the first 5 years. The majority of us have mild cases that are only small and infrequent interruptions within our lives. Some of us have severe cases that are very challenging and disruptive. Normal is to achieve a remission after a bit of trial-and-error, and stay within that remission for 2, 3, 5, 8 or more years. I'm 8 years into a remission. Everyone flares eventually but when we're we'll managed, flares are infrequent, short, and mild.

Yes most gasteroenterologists pooh pooh diets and alternatives. Why? Scientific evidence is either non-existent or weak at best. For liability reasons, our doctors cannot recommended unproven treatments.

This is a lifelong illness, and some do try alternatives and diets. Some find improvement from that quest, while others find no relief from it (present party included).

It's a very individual illness, what's one's miracle treatment, does absolutely nothing for another's, and might make another's symptoms a whole lot worse. Reading one person's miracle treatment has no guarante of it helping you.
Posted 10/21/2020 9:02 AM (GMT -6)
Mine began as proctitis about 10 years ago and eventually progressed about 2 years ago with a bad flare that I am still trying to get under control. I was well controlled with Lialda and rectal meds for most of the 8 years before this flare. Just had a brief hospital stay and started Remicade last Monday and am hopeful that I will get back to remission.

However, UC is so particular to each individual, that you will hopefully keep it well controlled with medications. Some advise is to embrace the idea of rectal meds. They are a drag to use, but they truly help.

Good luck and use this forum -- Lots of good information.
Posted 10/21/2020 10:19 AM (GMT -6)
I was diagnosed in June of 2013 after being treated for severe bronchitis, asthma, and a sinus infection with Augmentin and a 2 week course of prednisone. My PCP suspected it was bacterial colitis but my scope and biopsies came back as UC (to 24 cm). I started with Lialda and did ok with that at first but after a really bad flare up in November of 2018 I ended up adding Imuran to the party. This summer I was having issues with the only generic form of Lialda my pharmacy could order so I switched to Colazal and have been great since then. Hoping to make it beyond the flare every 2 ish years this year!
Posted 10/21/2020 2:17 PM (GMT -6)
I was diagnosed in 2005. Prescription meds worked for the first 3 years or so and then my symptoms came back with a force. After trying just about every prescription available, including biologics, my doctor suggested I have surgery to have my colon removed. I was just about to agree to this when I decided to try a UC diet as kind of a last ditch effort before having surgery. That was an eye opener because the diet in fact was the only thing that helped my symptoms. After 7 years on the diet and some trial and error, I focused on 3 anti inflammatory ingredients that helped me the most. I've been taking those three in supplement form since 2015 and have been in remission since 2016. I've also been able to go back to a completely unrestricted diet. Considering what I was facing, it's pretty much a miracle that I almost had my colon removed and I'm now back to normal.
Posted 10/21/2020 7:59 PM (GMT -6)
sh!t sh!t sh!t .......... not so much sh!t ........ sh!t sh!t sh!t ..... not so much sh!t .....way too much sh!t .... sh!t sh!t .......not so much sh!t ........ etc, etc -

;-)
Posted 10/22/2020 11:54 AM (GMT -6)
My UC started 6 years ago I took 2 sets of antibiotics for a bad sinus infection was never right after that do to my crummy insurance Im always looking for outside the box cures tried all differnt diets lialda predisone suppositories uceris plus the uceris foam and welbutrion nothing ever seem to get me in remission well about 5 months ago I started LDN and I take a supp every other day and Im about 95 percent the way I used to be I go to the bathroom 2 to 3 times a day the only issue I have is urgency going in the morning but it is not as bad as I was in the past an I eat what I want in moderation of course but IM always worried it will come back and I gained weight again I dont have to hold on to something when the wind blows to hard
Posted 10/26/2020 6:29 PM (GMT -6)
Ipoop I always appreciate when you say things like expect the unexpected and it has calmed my anxiety more than one to remind myself that this is an awful and baffling disease. My story: just over 3 years since diagnosis, not loving my GI because my chances to communicate with her are few and far between. I journaled what foods hurt me and I followed IBD AID for over a year, six months very closely and it did help with diarrhea. Recently I started inflectra and had my fourth dose about 4 weeks ago. I was getting worse and worse. At the same time a parasite was discovered and I had two weeks of antibiotics (and fourth dose of inflectra a week after I finished the antibiotics. Since then I’ve had more energy, Solid BMs most days, I feel great! I’m even wondering if I was misdiagnosed in the first place. But I guess if that’s true it’ll take time to figure that out. This month I started eating my toast every day, I’ve eaten junk food which I’ve been careful with the last three years, I’ve had a few glasses of wine, I basically eat whatever I want and I’m feeling almost normal and giddy with excitement over it. So, maybe the Biologics of put me in remission, I may be my problem the last three years has been this parasite. And that’s my journey so far.
Posted 11/4/2020 6:48 PM (GMT -6)
I was diagnosed in 2007 at the age of 22. I had pancolitis from the beginning. the first 4-5 years I took Asacol and Pred for flares. in 2011 I got pregnant and had a great pregnancy no symptoms whatsoever. My daughter was born in 2012 and 2 weeks post partum I had to be hospitalized got a very big flare. My GI tried to control it with Pred but I became steroid dependant. Everytime I went down to 15 mg my symptoms came back. My GI then changed my meds to Remicade and Azathioprine. This was the best time ever, I went into remission for 7 full years. 2020 has been pretty tough for me. I started flaring this summer. my GI tried doubling my Remicade dose and the frenquency of my infusions. This didn't work. we are in November now and still flaring. Remicade has stopped working for me. In the next few days I will be starting Xeljanz. Hopefully this will put me back into remission.
Posted 11/18/2020 3:02 PM (GMT -6)
Diagnosed with UC back in 1987 when I was 11. A real life changer at that time. Being a kid is awkward enough at times, but having UC made it even more so. Was on prednisone and rowasa enemas. Also took a prescription pill but can’t remember the name.

When I was 24 I tried cannabis, not because I thought it would help, just because I wanted to try it. Have been in remission for 20 years. Luckily the state I’m in is now medically legal, so that has really made life easier. I still have urgencies from time to time, but that’s due to me not letting the foods I love go. I know it’s not for everyone, but life is so much easier not going to the restroom 20 times a day. Such a crappy disease.
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