"UNFORGIVING" That's the word tattooed over the tattered purple ribbon my tattoo artist creatively turned into the grim reaper. I've suffered from UC since the spring of 2009 and have searched for an outlet to express myself ever since. This is my first post, so be kind. I wasn't sure what to write, but as i read story after story i'm not sure i could add anything that all of you haven't experienced and/or expressed. It seems we're all suffering from this awful disease alone and in the shadows. At least that's how i feel. Like most of you I started with several tablets a day, then into remicade infusions and eventually surgery in the summer of 2014. Four surgeries all together including the hernia under my ileostomy scar. It did stop the pain and the bathroom trips aren't as urgent, but apparently the madness is never going to end. The constant bathroom trips, planning every place you'll ever visit with bathroom maps, avoiding restaurants with bad bathroom practices. The hardest thing for me is my support system. The wife and kids have been great from the beginning, but I fear it is changing. I'm no longer on steroids, remicade or humira and I look healthy, almost like it never happened (except for the scars). I truly feel alone and isolated now that I look normal, whatever that is, I feel my support system has become numb to my struggles. I hesitate to express myself and as more time passes my thoughts seem to drift back into the dark hopeless place in the mind. I need to hear at least one j-pouch recipient tell me that it's all worth it.
I can sympathise a little, despite my overall condition being good, it's still a long way off most people's normal. My boss in work expects a lot from me (including business travel) and even said today that I 'came through the 2 major operations without any adverse affects'.
That's because I look normal and try to hide any cramping or regular toilet breaks out strange eating habits. The fiancé is good as gold, but much the same applies, to be honest I quite like that everyone considers me 'normal'
Last weekend I had a stag do for a friend where I was expected to drink to excess, eat bad food and get involved in paintball, they seemed frustrated that I struggled at times, like I wasn't fully participating even though I did well, I just wasn't bursting with energy the whole time.
Appreciate that I am where many people would like to be, but even so I feel your pain, like I'm distancing from friends and just bring difficult in work.
I have just got a new job. Admit I have concerns over my ability to do the job, whether I will have the concentration and flexibility to cope with a demanding new role!
Head down and carry on! The guys here all know what your going through, and no matter how bad you feel, someone here has it worse! Lol. Just vent and ask questions, you will surely get the support you require
Welcome to the forum and feel free to unload your frustrations and concerns here. Most people who have good or satisfactory results with their J pouches continue to enjoy their lives and do not visit here often. Most visitors to these boards are seeking solutions to the various problems that they are having with their pouches. In reading a number of posts, you may find suggestions that would be helpful to you. In addition, you can post specific questions that you have and will very likely get some good responses. Your support system is very important in times of need. My advice is to be open with them about your feelings and concerns, even though you have expressed them in the past. If needed, you can always go to a counselor or therapist with experience in dealing with long term conditions. But above all, never lose hope.
For me, yeah it was worth it. I am 61 now and dealt with IBD since I was 15, with colectomy at age 40. Sure, my husband (who was my boyfriend when I was first diagnosed) and my family have been supportive. Like you, I've learned not to complain about my struggles any more than is necessary. I don't want my family to become deaf to me.
The first year was rough and my function improved gradually. I actually only dimly remember what it was like to have a healthy colon, so for me I've focused less on my toilet trips, and more on how I feel. My kids were 8 and 10 when I had my surgery and they were great. A couple of months post op I was able to volunteer daily in their classroom, chaperone their field trips, serve on the board of the PTA, go camping, family trips, etc.. Sure, I've had complications that interrupted my routine, but we've managed.
Both of my sons and my husband have all developed UC, so they all truly "get it." I would have preferred to be the lone UC patient in the family, but it is what it is.
Bottom line, I have no regrets, particularly considering my alternatives (ileostomy or bleed to death).
Don't feel like your alone. We all struggle with the "you look fine" comments and expectations from others. Especially from people that are new in your life and haven't truly seen how bad it can be. Sometimes it takes an emergency surgery for those people's eyes to open. No matter how close they are too you.
My husband, j-poucher for 23 years. He was never in remission with UC, eventually ended up always on steroids. He is in a great shape (57 years old) . Best decision he made to go get the j-pouch. Sending hugs to you!!!
I'm 16 years post surgery, and I have no complaints. Yes, my frequency is higher than I would wish, but I am healthy and can fully participate in life, like I did pre-UC. You seen to be a ways out from surgery and I would expect you wouldn't have to know where bathrooms are when you are out and about. I did that, but only when I had UC. If you still have urgency I think that should be addressed. Most of us can hold it for quite a while, not like when UC was active. Have you been scoped recently?