Just realised - it's 11 years with UC for me this month

Seeing signals of yet another flare last couple of days

I just realised that I have now had this condition for 11 years, whereof I had 2½ years of med free remission maybe 6 years ago. Yet after all these years I seem to mentally react the same way every time. I think I can't just accept I got this. Every time I hope it's over.

I have a relatively mild condition I think. I seem to get a flare every ½-1 year, however recently every about 4-5 months. My flares is a bit of blood on the poo, no real physical pains etc. Toilet visits 2-4 times a day. Once about 5 years ago, I had to stay home some days because to many toilet visits. I got Pentasa and it improved.

Besides that I have managed on Asacol and Mesasals.

So why do I write this? Well I am just very sad right now as this flare once again puts me mentally down. I might have had 11 years of manageable UC, but I am hardly struck by the anxiety related to it. It has limited my life soo much the past 11 years. Kept me from daring changing job, travelling etc. I fear getting to excited/nervous because will that cause a flare etc etc etc?

I fear that it will worsen into some of the cases on this forum. "I live today in a potential future worse case scanario". I fear my kids will get it etc. fear fear fear.

Talked to my wife about it today. She is so tired of my life stopping every I see a bit of blood in the poo, or some unusual poo etc. I understand her.

I have now had it for 11 years. Why can't I believe it will probably stay at this manageable level in the future, or at least for several years? A mentally stronger person would not have been limited by this in practice.

...........Sorry just had to get it out as it limits my life quality so much, this fear of getting sicker.

Does any of you have it this way? Do you have any techniques or whatever?

What do you think of my situation? etc.??

Best regards

a mentally affected UC person

     It was eleven years ago last Oct that I was diagnosed in the hospital.  When admitted I swore I had rectal cancer, the same thing that killed my grandmother.  I was greatly relieved to hear it was UC and although uncurable, it was treatable.

      Since May of 08, when I was hospitalized the second time and for ten days, I have been flaring a lot.  Seems like I have become prednisone dependent.  When first diagnosed, I suffered the flare about two or three months and then enjoyed a two year remission.  Unfortunately, I went off the Asacol and then flared in Oct of 2000.  The doctor switched me to Colazal at that time.  He also put me on 6MP.  Another three month flare and then again two year remission.  Since 2003 I have been flaring yearly.

     I don't let it get me down.  Perhaps you could talk with a psychologist or someone who could help you come out of this depression because that is what I think you may be suffering from.

     Losing my colon is the last thing I want to do,but if the Remicade fails and my next step...Humira also fails, then that is what I am looking at.  Just keeping my fingers crossed and thinking positively that my 4th infusion this Friday will work.

4 years this month for me. It's weird how I think of life pre-UC and how naive I was an unappreciative of good health. Like the other posters, I have really tried not to let it stop my life. On only a handful of occasions, have I skipped an event that I wanted to do because of UC. Exceptions being something like going to an NFL game during a serious flare where it was just not conducive to a pleasant bathroom experience and/or able to go easily.

I do have fear though. When will I have my first ooops moment in public? When will I have to pull over at the side of the road? When will I be on a plane and someone will think I'm a terrorist because I'm running to the bathroom when we're getting ready to land? Inevitably some or all of those things will happen..... I really fear getting old with UC. Being in a nursing home someday and not being able to take care of myself during a flare.

It's not a sure thing bet but I keep taking it day by day and hoping the longer I can hold on and manage living with UC, that eventually a better drug or improved surgical methods will exist. Heck maybe they'll even find a cure!

Qvist,

Great questions!

Yes, I live a totally normal life. I am an avid hiker and backpacker, since surgery I have done several international hikes in the range of 100-200 miles. During the course of the week I am at the gym doing aerobic/weight training 5 days per week and on the 6th I hike in our local mountains. I am much more physically active post surgery than I was pre-surgery as can be expected. I have no nutritional problems; I eat everything including popcorn, nuts, etc. My diet is primarily lots of fresh fruit (by choice as I love fresh fruit). There are no foods that I cannot eat but I do try to stay away from anything with sorbitol as it makes things really loose!

I am still on this forum because when I was really sick my GI told me that jpouch surgery was a bad option and he tried to convince me to go for a permanent ileo. I didn't want a perm ileo as I would have had to give up backpacking which I didn't want to do. While being hospitalized for a bad flare I met a nurse who had jpouch surgery. She looked so healthy and happy. She ran marathons; she worked 10 hour shifts on her feet, she had a baby post surgery. She was the embodiment of a very healthy person and she dispelled all the myths about jpouch surgery for me. I come to this board to dispel myths for others who might be at a point to have to make the surgery decision.

Surgery gave me my life back. Six weeks after my reversal I went camping/hiking in Yosemite. At 3 months I traveled through Europe, at six months I did a half marathon. I have since done 3 international long hikes, backpacked in the Sierras, hiked in and out of the Grand Canyon, traveled and hiked in Patagonia, Turkey, the Middle East, and Europe. I have also completed 170 miles or so of the John Muir trail in the Sierra Nevada.

My GI told me that the more frequently one flares the higher the risk for eventual surgery. I'm not sure if that is true or not but it did come to fruition in my case. I had 10 years of very few minor flares followed by one severe flare that failed all medications. This was back when 6MP was the final drug before surgery.

Sue

Qvist,

All of us who selected surgery for UC did so with much angst and trepidation! It's not easy to opt for elective surgery for a condition that may go into remission. It's also scary to pick the devil you don't know (surgery results) over the devil you do know (UC). I also think UCers tend to rationalize their condition (I certainly did). I didn't realize how much quality of life I had lost until my surgeon pointed it out to me in a consultation. UC slowly took the things away from me that I loved and because it was gradual I accepted it. But I also clung on to the hope that I would improve in time.

A jpouch is not an external bag. The colon and rectum are removed and 9-12" of the small intestine are pulled down and folded to create a false rectum. With a jpouch one uses the toilet in the same fashion one does with a colon/rectum combo. That is one of the reasons it was appealing to me; to maintain normal function. No one will know you have a jpouch unless you tell them.

I had tons of anxiety with UC; used to regularly take Ativan. I no longer need it. I think one thing that can improve your chances for a successful outcome is to consult with an experienced surgeon when you feel you are at that point. My surgeon had done over 2000 procedures and is considered an expert. My surgery was a little over 1.5 hours.

Don't get too worked up over this but do understand it's a fantastic option if meds aren't working.

Sue

My frequency is 6-8 but you have to realize that it's nothing like frequency with UC! It's as quick to empty my pouch as it is to urinate. In fact many times I don't know I have to empty my pouch but use the bathroom to urinate and the pouch empties too. Do you know how often you urinate in a day? There is no urgency with a pouch. I can hold it for several hours if I need/want to.

Sue

Three times a day!!!! Geeze, you must not drink that much liquid...I urinate at least 8 times a day, but I drink a lot of water every day; 1/2 to 3/4 of a gallon.

I'm not sure that 15% figure is correct; it seems a bit high. The biggest reason to have the jpouch removed is due to getting a later diagnosis of Crohn's. However, many that are diagnosed years later with Crohn's can successfully manage their disease and keep their jpouch. Over 90% of people who have jpouch surgery are satisfied. And the majority of people who have any type of surgery for UC like the surgical results better than UC even with the compromises.

Sue

Wow, I can identify with your original post.  My life has gradually gotten so small since I was diagnosed that I can't believe it.  Like Sue said, it's happened so gradually that I don't even know how to get out of this trapped feeling, not going anywhere, or at least out of my own little area.  And because I'm older, like JM, part of my anxiety is about winding up in a nursing home with this, only I'll bet I'm a lot closer to being there because of my age. 

Remicade is my next option, so I'm at about the end of the line.  I just can't seem to get off the fence and try it because I'm so anxious about it, the side effects, and how it might effect some of my other health issues. 

Imuran gave me a bright spot of feeling cured for about a week.  I was feeling so positive then, I even bought tickets to see Bon Jovi next month, but when I had to go off the Imuran, I'm back at square one, and now thinking, should I try to sell the tickets?  This is the first event like this I've scheduled and tried for a year. 

But it was amazing how quickly I wanted to jump back into life.  Sometimes I notice that I can feel in remission in one afternoon, but the next day it's back to reading Readers Digest in the bathroom.