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9 replies

Hope

P phonix2gMember
Hey fellow jpouchers I just wanted to start off by thanking everyone on this site that has offered me their point of view and insight and have been supportive in my time of need. I struggled with UC for a decade from my 20s into my 30s. As you all know its a rollercoaster ride none of us like to attend. I made the decision after being in the ER every month that this can not continue this way for me or my family (wife and 3 kids). I knew all the terrible side effects of then long term use of the medicine I was taking and also the higher risk to develop colon cancer. I was aware how big of a surgery this was and the risks of going through it and of course you don't think when the Dr. is explaining what may happen that you would be the one the stuff would happen to. My surgery was successful in the end but not until after infections, toxic shock, anemia, blood transfusions, days in the ICU, and multiple psychological changes. The nurses that took care of me were very incompetent and trained very poorly. I suffered a lot of pain and suffering not only from the multiple surgeries but the treatment I got in the hospital. There was enough trauma that happened that I had to seek therapy to try and get past all of it.

After my takedown until about a month ago I was questioning my decision and asking myself "how will I live like this for the rest of my life?". I had to continue to remind myself how horrible I was suffering from the UC and the toll it took not only on me but my family. I'm happy to say that today I've come to the realization that I have made the right decision. I in no way had an easy procedure or recovery and it changed me a lot. The way I act, the way I think, and the way I react to other people. For those who are struggling especially brand new out of surgery I would suggest you accept the decision that you've made and start the process of being comfortable living with it. This definitely takes time it took me a while but today I realize that this is the new me and yes there are a lot of adjustments and maintainance and bad days that come along with it but there is a reason this happened to me the way it did and nows that time to make the best out of it and enjoy the rest of my life with my family. I am no longer sick I am recovery and day by day things start to get a little easier due to me accepting the way things are now and the way they will be.

I was always a positive person but after so many things happening after having my colon out I felt like I was never going to recover and slid into a dark hole I couldn't get out of for a while. I have climbed out of that hole and feel reborn. No more worrying, no more negativity, and no more asking "why me?". I was dealt a crappy hand we all were but its time to turn it into a Royal Flush and let the chips fly. Keep the hope alive each and everyone of you and know if you lose that for a second that you have a place to go to give you that hope back. Thank you all again for being there when I needed it the most. I will be here for anyone of you that may need my help also.
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Jan DollarJan DollarModerator, RN, retired
What an uplifting post! We cannot have enough of these. While it is perfectly fine to be angry, depressed, etc. about whatever situation you find yourself it, it is always a great thing if you can also find some joy in every day. It is always very helpful to see a glimmer of something good, no matter how awful things seem to be.

I may often be criticized for being too much of a Pollyanna, but I like to focus on what I have rather than what I have lost. Doesn't make me better, just happier.

Thanks again for sharing your positive outlook and I hope things continue to improve for you. It really means something when it comes from someone who has been in both worlds.

Jan Big Grin
K KeepFighting(Manny)Member
Just would like to say thank you phonix2g for this post, I'm am one of the newbies to a fully functional j pouch life and your post made me think about how lucky I am that I did not have any major complications with my two surgeries.. As you stated, there is going to be good days and bad days but life is all about perception.. I'm happy you are viewing what you went through for what it really is and that's a potential life saving blessing and once again thank you for sharing this post and reminding those of us who forget that there is a light at the end of the tunnel...
N NroleyMember
What a great post!!!! I had my pouch surgery 9.5 years ago and have been relatively healthy until recently, now I'm going through alot of problems including figuring out if I have crohns. People keep acting as though all I went through jpouch surgery for nothing if I'm going to be sick here on out with crohns. My answer was "no way, it gave me 9 good years and a beautiful daughter that I NEVER could have had without my jpouch". I don't know what the future holds, but I'm trying to focus on that right nowSmiler
TE MarieTE MarieMember
My take down surgery was 2 years and 8 months ago. The doctors lead me to believe I'd be cured by the operations. Yea, why didn't I do this sooner? Why did I ever take prednisone? Why does anyone take Remicade? I know why I didn't do it sooner, took prednisone and why others take Remicade etc. now. I elected not to go the biologics route because not only did I have UC pan colon I had diverticulitis pan colon as well plus I was in my mid 50's. I don't believe a cure of any kind will come about in time to help me and I'd already had UC long enough to be at risk of cancer etc. It was time.

I read a booklet the doctor gave me and looked it up on-line but didn't look up this site until after take down. I still would have had the surgeries. You read statistics like only 4% get cuffitis and this and that and 95% are satisfied with the surgery. You forget that someone is in the 4% who get cuffitis, the 5% not satisfied with the surgeries, and the percentage that will get pouchitis until you are one of the people in those minor percentages. My pre-surgery research didn't include things like fistulas, abscesses, strictures, adhesions, pelvic floor dysfunction, obstructions, dietary changes, dilatation, etc. I haven't had all the problems listed but I've had enough and what I have are chronic.

I also had other autoimmune health problems when I had the surgeries, that I attributed to getting UC in the first place. They got worse with the surgeries and have stayed so.

There are mental health issues, that I acquired subsequent to the surgeries, which include Major depressive disorder, anxiety and PTSD. I've been in therapy for 2 years.

I owned my own professional firm and half of another business before my UC diagnosis. I had to sell my professional firm in 2000 as I could no longer work full time. I worked for the new owner part time. We closed the other business in 2009 because of the economy but I only did the accounting for that business at home. So I went from working more than full time to part time to being disabled and unable to work.

I was approved for social security disability the first time filed as "not expected to improve".

I still have a wee bit of "hope". I'm too miserable to give up.

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