My colitis story and others' input

Hey guys, I wanted to thank everyone who takes the time to read and respond to this post. I apologize for the length. I am new to this forum and have read many many other posts on this topic and finally decided it was time for me to join in. This is a great website for information and to talk to others who have this terrible disease, in the real world, it is much harder to find people suffering from the same thing. I wanted to get into my story to let everyone know how I came to this point and also wanted others input on some things. I am 24 years old so I have this disease at a relatively young age.

I was diagnosed with severe Ulcerative Colitis in 2008 (I was 18) but have had symptoms since the end of 2006. My first colonoscopy was in 2008 when I experienced my first bad flare up. I had no idea what it was, I started to get pain and bloody diarrhea, and all of the usual UC symptoms. To make that long story short, I had a colonoscopy after many other tests, and the doctor found that the entire colon was inflamed (pancolitis). The first flare up responded well to meds and went away fast, it lasted 2 months total. Than at the end of 2009 (my UC LOVES to flare in the winter for some reason) I had my most severe flare up to date. This time, I immediately went to the doctor and was prescribed the same courses of medication except I started on only 40mg of prednisone. This flare was much more stubborn and absolutely did not respond to the prednisone OR the asacol. I received another colonoscopy and this time, my GI at the time said my colon was in worse shape that in the first flare up and I even had small colon polyps. The GI than upped the steroids which did nothing, and kept me on only the half of the max dose of Asacol. After the failure of these two medications, he recommended that I skip all of the other drugs and go straight to surgery. I was torn and so was my family.

We decided to go to Cleveland Clinic to get a second opinion, and they said that getting surgery this early on in the disease was a very bad idea, especially since I have only tried 2 medications. We than decided to go with a new GI since my old one was always in a hurry during appointments and never really seemed to care about how I was doing. The new GI was much better at listening to questions and telling me my best course of action. I was prescribed the Max dose of Lialda, and the GI said that the next step was going to be immunosuppressants if that didn't work. Surprisingly the UC FINALLY responded to the Lialda.. and gradually became better. Who knew that this weak drug would take down a flare this stubborn. This flare up lasted about 6 months and was peaked out for about 4 of those 6 months where I was having about 20 bowel movements a day and extreme pain. Work and school was extremely difficult, and but in the end I was able to get by with only taking a week off of work.

After this flare up, I had a BEAUTIFUL remission of 3 and a half years. Literally no symptoms at all, and I was only on the max dose of Lialda, It took another 6 months to fully recover from being on steroids for 8 months. I became careless after 2 years and only took about half of the doses of Lialda that I was supposed to, nevertheless, the UC stayed in complete remission.. than came the holidays of 2013. All of the sudden, I started flaring again, this time the flare became severe very fast, after one week, I was having severe abdominal pain and 20+ BM's a day. The first symptom always seems to be abdominal pain, and I had that on Christmas Eve, I figured it was just something I ate, since I did get a few scares during my remission, but they always seemed to clear up after a day or two. I DID NOT want to go on prednisone because it did nothing in the last flare up except give side effects. I went to the GI in early January and they of course wanted to try the prednisone before doing new drugs, which I agreed because I was desperate. Now this current flare up was terrible for about a week to the point where I couldn't work, but I consider it mild due to its length of time.. I am still flaring now, but symptoms have been gradually going away for the last 2 weeks. Prednisone may or may not have been influential. During this flare up, I did everything I could to get it to go away. I am currently taking probiotics and am already tapering off of the prednisone (started at 40 mg, and am at 30mg for the last 5 days currently). I am also now trying the Mangosteen juice because I heard it helped (its really expensive though), and I have been back on the max dose of Lialda for a month. There are many things I tried for two weeks but stopped including the SCD diet, fish oil (it made me throw up so I stopped), and cabbage/fruit juice. These things may or may not have helped. Everything I ate went straight through me or made me throw up. Something made this flare up start to go away, but I can't pinpoint what it was. It has been healing for the last 2 weeks despite stopping SCD (I can't seem to find the time to cook EVERYTHING) and the other alternative medicines. I plan to take probiotics and the max dose of Lialda FOREVER, and stay on the mangosteen until it runs out (I will see if I start to relapse at that time and if I do, I will go back on it). The flare seemed to start healing a week after starting to take the prednisone (I was peaked for about a week), but it didn't start healing on a day that I started trying anything. It has been DAILY getting better, right now, I am down to about 4 bowel movements a day and am so happy that I get to see relief after just a month. The worst symptom was by far the abdominal pain.. It was completely unbearable for 2 to 3 weeks. It is healing without the fish oil, cabbage juice, or severe diet restrictions (only things I am restricting is alcohol, cereal, milk, popcorn, caffeinated beverages, and fried foods). During remission, I eat and drink everything I want, but that is only in COMPLETE remission. I am getting my 3rd colonoscopy in a week and a half, but I am extremely thankful that my symptoms are clearing up gradually. Right now, this flare up is at about one month length which is short, but I don't want to knock on wood, lol. My biggest worry is that once I get below 20mg of prednisone, I could relapse. This has never happened in the past, but symptoms have always cleared up in the spring or summer, not as early as January. I have just heard from others that they have relapsed after stopping the prednisone. The odd thing about my UC is that urgency isn't as terrible as for most others, it's generally pain and high frequency, but I usually can still hold it for a few minutes, which is different than what I hear from others, and my second colonoscopy oddly showed that everything was inflammed but the rectum, which is also very weird, because the rectum is usually the first and last thing thing inflammed (and it being inflammed causes the most urgency), but I guess everyone is different. I had the most urgency on my first flare up.

I have a few questions, and would like to hear from you guys. How long do your flare ups/ remissions last? What works best for you to get your UC under control? Am I lucky that I get such long remissions after having a GI say my UC is so severe that I needed surgery in 2010? Has anyone had great success with surgery? I would love to hear from those who have had a really successful battle with UC, and those who have had no luck and were basically never able to maintain remission.. both ends of the spectrum and in between, it would be great to hear from anyone else suffering. I wish I could pinpoint what exactly what is making my immune system calm down right now.. I guess I will figure it out once I go back to barebones on medication. One thing I know is that I am going through a low stress time, my highest stress time was August through December when I took my last semester of college, graduated, and was doing college FULL time, and working FULL time, I was putting in about 80 hours a week. Now, I am only working about 30 hours a week with no school, and my UC was nice enough to let me graduate college before it went crazy. I am pursuing jobs now, and that may cause some stress. I apologize for the length of this, but I wanted to get my story out there to help people try and understand this horrible disease. I am willing to answer any questions, and could write forever on this topic but I don't want to make you guys read a novel, lol. Thank you all for reading!

Post Edited (Cortland) : 1/24/2014 8:07:47 PM (GMT-7)

Looks like "woof woof" has created a new account. I'm am truly sorry that your experience has been so awful...but that is NOT the case for everyone, or even the majority of people who have surgery. I hope the people who come here looking for good help understand that your trials and tribulations are not inevitable or even typical.

I had to get surgery. I had only been diagnosed 8 months prior...I didn't get a chance to try many meds, but I was dying. I was more than happy to have surgery to remove my colon and get an end ileostomy (my choice). My life has been GREAT every day since!

Cortland~ I hope you are able to find the right medications/supplements/foods...whatever it takes for you to get this awful disease under control and feeling good again.

Hello and welcome to HW.

I hate to say it but i wouldn't put too much hope in the mangosteen, especially if it's hurting your pocket. I haven't had much luck with any of those types of things (but that's just me). You're probably doing well from the prednsione. It's perfectly normal to not see results from pred immediately. Many people require a few weeks on a high dose to get results. I hope I am wrong and you taper off and things stay calm with Lialda, probiotics and mangosteen but in my experience, it's usually not that easy. I was in a great remission for a year+ with 5ASAs alone and when they stopped working, it was very difficult to get into remission. I took pred for an extended period of time, unable to taper off and finally started 6mp which has given me a long remission. I do not know what the future holds for you but I hope it's easy and mild and the long remissions continue.

I would suggest adding in some rectal meds along with the Lialda. Rowasa enemas may help you get rid of that last bit of blood you are experiencing.

That's good, I hope the Humira works for you too.. Getting in remission seems like something your body randomly decides to do, NOT something the medication does for you.. but in the end, this disease is extremely unpredictable, and I do believe that medication and diet does help with the symptoms, but in the end it seems like whatever triggers the immune response on the colon is what is causing all of the issues, and that trigger comes and goes differently in different people. Good luck Mr. Coolitis.

Thanks for your input Matt! Yeah, I am going to see what happens when I run out of the Mangosteen and if I do see ANY return of symptoms, I will probably buy another bottle. The problem is a return of symptoms could be two things.. Mangosteen, or the result of a tapering of prednisone.. So I won't be able to pinpoint which of the two it is. I have just hit 10mg of prednisone on Monday.. Also I am getting my third colonoscopy tomorrow (just finished the Gatorade prep and I have to say, it is much easier than the Moviprep that I did the last two times). Currently down to two normal formed bowel movements a day (except today due to the colon prep). In my eyes, two is a miracle, and I would happily live with that for the rest of my life if I saw no big flare up again. The pain was COMPLETELY unbearable in early January.. now, I get the mild discomfort once at night time when my bowels are most active. I have seen blood only once or twice in the past two weeks, so the symptoms were still healing before today. They are not once a day or total remission, but they are darn close (with some prednisone and other meds). We will see what the colonoscopy says!