Quality of life is what made me decide to have my colon removed. My surgeon told me how severely damaged my colon was and that it was ultimately my decision. I could not bear the thought of living the rest of my life the way that I was. Too weak, too sick to do anything at all. I was missing out on everything....kids, husband, family, career. I was miserable.
I had previous surgeries and the Crohn's would come right back within weeks; I tried tons of meds including Remicade and nothing helped. I just finally got to a point where the thought of having a bag for the rest of my life didn't sound as bad as what I was living through.
The recovery from the surgery was awful....but it did end. I am finally in remission and back to work (part-time) for the first time since I was diagnosed. My family is happier and healthier than they have been in a long time:) My kids laugh and giggle again....I would not change my permanent ileostomy for anything. It saved my life in soooo many ways.
My thoughts and prayers are with you.... Hugs, MindyView Thread
I do not have a J pouch, but I do have a permanent ileostomy. I struggled for 2 1/2 years, 5 surgeries, and tons of meds (including Remicade) before getting to this point. My Crohn's was severe and completely took over my life. I had to go on disability and basically had no quality of life. The decision to have my colon and rectum removed were not made lightly....I agonized over it for months and months. When it came down to it, I was only surviving....not living. I knew that I did not want the rest of my life to be like that. I have a husband, 2 small children and a career that I was missing out on. My colon was what was keeping me so sick all the time. I had that surgery December 14, 2010 and now, not even 6 months later I am in remission and I have returned to work part-time. I am able to run around with my husband and kids again. I have cried oceans of tears over this disease....what is has taken from me and the physical (and mental) pain it has caused me. For me, having this surgery saved my life and I would not change it for anything in the world.
Do not give up....the answer is out there for you:)
kaj2313.....I saw your post today where you stated that you don't get support on here anymore:( I'm so sorry that you feel that way. The only reason I did not respond to this post earlier was because you are asking about a specific procedure that I have not had done, and I did not think that I had anything to offer you. I think I have had every procedure, BUT this one done. Please don't give up on us....we do want to be here for you.
I have heard of this procedure, and imagine I will need it someday, too, because of all of the scar tissue (I've had 5 surgeries in 2 1/2 years), but I do not know off the top of my head anyone that has had it done.
Again, so sorry that you have felt that no one has been here for you:(
Hello Crohnie/UC family! How is everyone doing? Things have been busy for me since I have started back to work and have been trying to make up for lost time with my family and friends:) I received my first real pay check last week...felt so good to earn money again...I hate being on disability. Please don't mistake that for not being thankful; we would never have made it without the disability and I thank God everyday that I was not denied those benefits...but I have never been one to sit at home. I love my job and honestly did not think I would ever get back to it. My first day working with patients was on Monday....I was on my feet for 5 hours straight....that has not happened in eons! My feet were tingling when I got home, but it was all good! It was like I had never left. Caught up with some old patients of mine and my co-workers are absolutely fabulous...as are the docs that I work for:) The one doctor that signed our paychecks pulled me aside and said that when she saw my check in the pile for her to sign she wanted to put happy faces all over it. They have really made me feel wanted and needed there! I hope that my body continues to cooperate....would love to increase my hours in the fall when the kiddos go back to school, but for now I am only working 3 half days.
I do have to have another bone density scan done since last year's showed thinning of my bones from the steroids. I have been on the steroids ever since then, so the doc just wants to make sure that I am not any worse. Told him I would like a little break from docs and tests but that I would definitely get it done. He totally understood!
Hope everyone is enjoying the weather....we've already had some real scorchers here in Ohio...gotta watch the dehydration.
Take care and pop in and let me know how you are all doing! I think of all of you often!
I'm so sorry that you are having such a rough time right now:( I was diagnosed with Crohn's Disease in Sept 2008. Since that time I have had 5 surgeries and multiple hospitalizations. I had to quit my job as a Medical Assistant and go on disability. My kids were only 7 and 5 when I was diagnosed. I have missed out on soooo much! I finally received the wonderful news that I am in remission, but it took having my colon and rectum removed to get me there. I now have a permanent ileostomy; but I have my life back. I just started back to work this week. Only working about 15 hours to start out....I'm so afraid to trust my body after all that I have been through! I wish I had some wonderful advice or some concrete answers for you. Hopefully, you have some family and friends near you for support....to help with the kids and run errands for you. My family was wonderful with that kind of thing. I basically spent the last 2 1/2 years in bed or on the couch. I know how helpless you feel and I understand the guilt you are feeling about not being able to be the parent that you want to be right now. You must give yourself a break....get the rest when you need...don't be afraid to ask for help. Push fluids all the time so that you do not get dehydrated. I can't tell you how many times I ended up in the ER for that problem! It just sucks the life out of you:(
Have you talked with your dr about taking an anti-depressant? If not, you should....it really does make a difference. These diseases are too hard on us physically and emotionally....and being on and off the steroids can wreak havoc on us...I have been on prednisone for 14 months straight and some days I think I might lose my mind!
Please keep coming here to vent! Hopefully, some of the other will be along shortly with some advice for you. I just wanted you to know that you are not alone...I have been where you are at and I know how isolating it can be.
Hugs to you....hang in there and get lots of rest! MindyView Thread
Welcome to our community! I'm so sorry that you are having a rough time right now:(
I have been through 2 1/2 years of pure hell with Crohn's disease. I've been on disability and have had 5 surgeries and at least 15 hospitalizations in that time. I've been on tons of meds and nothing really helped me for a long, long time. I am finally in remission, but it took removing my colon and rectum to get there. I now have a permanent ileostomy, but I have my life back. I am starting back to work this week and for the first time in over 2 years I am out and about with my kids and hubby. The past 2 summers I have done nothing but lay on the couch in agony. Crohn's settled in my rectum and was so painful. I was going to the bathroom up to 25 times a day and each time felt like I was giving birth and the only thing I was passing was water! It was just horrible. My weight got down to 98 pounds at one point. I lost 50 pounds total. I have been living on BOOST and Gatorade. If I eat any kind of solid food I have to take phenergan for the nausea. I know how hopeless you feel. I can't tell you how many nights I would lay in bed and cry and cry and just wish that I would never wake up. I was housebound for a long time because I could not go 10 minutes without needing the bathroom;( I ended up breaking down and buying some Depends just so I could make it to the stupid grocery store. It was just so horrible! Losing control of your bowels it just so humiliating! That really messed with my head for a long time.
I remember the day I was diagnosed....the very first thing I thought was "I'm gonna end up with a bag"...like it was a death sentence or something. I truly thought it was the most horrible outcome possible. 2 1/2 years of nothing but pain and grief can change a person's mind though. It is such a blessing now....I still can't believe it!
You WILL be normal again....just pay attention to what your body is telling you. Rest when you need to rest and push fluids all the time. Dehydration is the absolute worst! Ask for help when you need it and be kind to yourself.
Take care and come back often to vent....this group of people saved my sanity a million times over the years! You are in good hands here!
Hannah, I had a complete Proctocolectomy; my entire colon and rectum are gone....my ostomy is permanent. I'm ok with all of it....I finally have my life back. Completely worth it....it took me a long time to get to the point of acceptance and I honestly did not think that I ever would. I feel so much better:) I have been running every day for over a week and have not had to spend 1 day in bed (let alone the 3 that it usually takes) to recover. I have been running my kids everywhere and taking walks and going shopping, going to the pool.....we have been all over the place. I'm volunteering in my daughter's class all day tomorrow and then it's back to work on Wednesday:)
I do have a follow-up appointment with my surgeon this Friday so we will see if he has any other info for me. I think he will probably release me from his care and turn me back over to my GI. I have an appointment with the GI at the end of July.
Hope you all had a great holiday weekend:) xoxoxoxo MindyView Thread
Susan....my ostomy is permanent. When I had the colostomy done last March, it was supposed to be temporary. Crohn's got inside my stoma when I was 6 weeks post-op and tore up my colon. Tried Remicade, but there was too much damage so my surgeon removed my colon and rectum in December leaving me with a permanent ileostomy.
I'm gonna try not to stress, but I know there is a lot to learn at my job. Things in the health care field change so quickly and I have been out of the loop for over 2 years. They are very patient with me, so I know it will all be ok. It's also a huge plus working for doctors...they know that stress can trigger a flare. It's such a wonderful place to work:)
I hope everyone is feeling well enough to enjoy the holiday weekend! I am finally out and about just about every day now:) Still can't believe that I am finally in remission:) I officially start back to work (I'm a Medical Assistant) next Wednesday:) I really never thought that I would be able to earn a paycheck again. Hope that my body can handle the stress of re-learning what I need to....can't wait to get back to my co-workers and the docs that I work for! They have been so fabulous to me throughout this entire nightmare! I'm starting out working Monday afternoon, and Wednesday and Friday mornings for now. Gonna take it S LO W
I've had a busy week....I've been in to the office a couple of times just to volunteer and I helped out in my daughter's class, I've been out shopping and have made it to a family function. Right there is more than I have done in the last year combined. Each night when I go to bed I wonder if tomorrow will be the day that I pay for it and have to sleep all day to make up for the running around. Each day I have gotten up ready to go again!
I'm trying to get my courage up to go swimming with my ostomy....not sure if I am ready for that yet. My mom has a pool, so at least I won't be in public. It's supposed be close to 90 degrees here in Ohio this weekend....I just might have to try it. We'll see:)
Welcome to our group, Carol! So glad that you are here:) This was the first place I came when I was diagnosed in 2008. These guys have held my hand every step of the way:) And it's been a looooonnnnngggggg way! Hope that your GI comes up with a treatment plan that works quickly for you.
Unfortunately, it has taken me 2 1/2 years and 5 surgeries to get into remission...but I made it. I have a permanent ileostomy now, but I get to return to work next week and I just know that I would not be in remission if I didn't have this ileostomy:) I finally have my life back!
Looking forward to getting to know you....enjoy your holiday weekend. Hope that you are feeling well enough to get out and enjoy some summer weather:)