Surgery was a good option for me. UC had completely debilitated me. I had no quality of life and failed all the meds. I opted for the 3 phase J-pouch. All the surgeries made for a really rough year...
Looking at the calendar, I just realized that it has been three years ago today since I had my first of 3 surgeries. I just wanted to reach out and say thank you to all those awesome people on this...
Hi Ruby, I had my (1st of 3) j-pouch surgeries in February 2018. Before surgery I was in really rough shape and had no luck with medication (even prednisone). Because of my cancer history, my Dr’s...
Hi All, It's been a bit since I checked in but decided to check in today and saw this post. I'm doing as well as I could have hoped. It is hard to believe I'm getting close to two years from my...
Be patient with yourself. They told me not to lift anything heavier then a gallon of milk for 6 weeks, even after the takedown surgery. I thought I would be right back to my same lifting routine,...
I had my colectomy surgery done in February 2018. I was underweight, on prednisone, and in really bad shape, so I had to have it done in 3 steps (all laparoscopically). Like lots of people, I began...
I'm happy to report it's been a year since my takedown surgery. A few days ago I had a pouchoscopy and my surgeon said everything looked great. He said as long as I don't have any issues, he didn't...
So happy to hear that everyone is doing good! This is definitely a long bumpy road, with occasional hailstorms, and hot lava! It took a long time for me to get here but, the past couple months have...
Those shots are the worst. I would give them to myself in my thighs. I only took them for a couple weeks after surgery, even though I was suppose to do 3, (don’t tell on me). I think they give the...
This is an interesting approach. I wonder if we will be seeing more of these combinations? Before I had surgery, my GI was trying to get me to approved to be on Remicade and Entyvio at the same time....
Andrina, Hopefully you were able to get some answers about the Belly Button, was it bleeding a lot? I know that they used my belly button as one of the ports for surgery, but the only sign was it...
Congrats! Recovery is slow but you will get through it. Rest easy and keep up with the walks, they totally helped me (maybe even more mentally then anything). Just stay away from the cream of wheat!...
Sorry to hear the meds aren't doing what you are hoping. My UC was persistent and didn't care about any drug or diet I threw at it. I had no quality of life. Even on prednisone, it was everything I...
I'm with you man! I think the sitting around part of recovery was one of my biggest challenges! I got so sick of bingewatching lame TV. Just think, you've done it before, you can do it again. Just...
Sounds like you are being really smart about everything. If Xeljanz really starts kicking in, it's a no brainer. Let it work it's magic for as long as it can. If it doesn't you've already figured out...
Thanks for your comments. I agree, that it really doesn't matter whether ailments are UC related or not. We should always try to make the best of the hand that we are dealt, whether it's UC, cancer,...
Good Luck Tomorrow Champ! You are a pro at the surgery stuff now. You'll be back in action before you know it!...
Over the past year or so, I seem to have picking up all sorts of new ailments. Everything from aching joints in my hands, to plantar fasciitis, to really dry eyes. With every new ailment, I find...
Thanks everyone! This forum has been a great resource for me. I really appreciate the educated, and positive tone of the conversations here. Keep up the great work! To Mrssmith687 - I'm happy to...
Big Day today! A year ago today I had my first step surgery (one of three). Since then, It's been a rough year of recoveries and adjustments but now 5 months post takedown, I can truly say life is...
Sorry you are so discouraged after your surgery. It is especially hard when you are right in the middle of it. I remember wondering if it would ever get better. Give it time, it will. You have some...
HaHa! You are much better at that then me. I’m usually way off on the way I imagine people look! Also, I started using that Mederma stuff on my scars, not sure if really does anything but, I figure...
Absolutely. I’m happy to answer any questions about my experiences. I will shoot you an email....
I wouldn’t be too worried about the scars if they are doing it laparoscopic. Over the past year or so I’m counting 12 incisions / drains I had on my abdomin They were all laparoscopic (4 surgeries)....
That’s exactly what I dealt with. A few months after my first step of surgery, I had bleeding, urgency and tenesmus with my rectal stump. I was planning on waiting around a year before having another...
Surgery found me relatively fast. My quality of life was terrible and I wasn’t getting any relief from the drugs. I agree with NSSG. At some point you have to decide what you are willing to live...
Quality of life is the key. If you have run out of medical options, and your quality of life is terrible, then surgery is really something to consider. I’m just over 4 months from my final surgery....
I’m not sure that having a super strong core is going to give you a big advantage. In fact, my surgeon said that thin, fit people often take longer to heal (or at least stop aching after surgery) I’m...
Two piece coloplast worked best for me. I used barrier wipes on the skin to protect it from the frequent changes. I also liked the barrier rings they seemed to really help reduce irritation around...
A year ago I was facing the same decision. The meds weren’t working and was averaging 15+ excruciating bloody BM’s a day (even on prednisone). Because of my past cancer history, my docs and I were...
I had a good friend that had mild UC for 8 years and was able to manage it without much trouble. When I was diagnosed with UC, I thought I would have a similar experience. Not even close. After I was...
Your life is about to get much better. It’s almost been a year since I had my first step surgery (1 of 3). Like you, my colon was in rough shape and my quality of life was literally in the toilet. My...
Champ is right. Don’t mess around if your not getting output and feeling nauseous. Call the surgeon and let him know. I got sick after 3rd surgery when I got home. I was super dehydrated and had to...
I’m definitely taking it easy when working out. After not being able to work out for the past year, I’ve basically atrophied into a bag of white flour. I’m getting sore from lifting pink 8 lb...
I’m just over three months post takedown and my ostomy wound site finally closed up a couple weeks ago. My surgeon left it open and I had to pack it with gauze until it closed up. I’ve read that some...
Merry Christmas! Good luck with your surgery. I had my final surgery (3 step) last September. It’s been a rough and memorable year. So glad I did it though. Like others, I felt so much better after...
So sorry! Pred was not my friend at all. It turned me into a living nightmare. I was having full blown temper tantrums (i am not normally an emotional person at all). On pred I couldn’t hold myself...
I had proctitis pretty rough in the rectal stump. I was having to pass stuff probably 3-4 times a day. It was no fun but I agree it helps you know you’ve made the right decision. Do you have a date...
I had my takedown about 10 weeks ago. Adjusting has been a little rough as expected. I’m overall happy with how things are going. The only real complaint I have is trying to deal with the gas. I...
I remember telling on friend that I was considering surgery and she said “Will you have to have a bag? That would be the worst!” I quickly corrected her, “No crapping your pants with bloody diarrhea...
I didn’t have a catheter on the third surgery and they didn’t give me one when I was readmitted. Probably because I wasn’t producing hardly any urine. All the fluids were just going right through the...
Everyone says the 3 step is the easiest recovery. For me, it was the roughest. At first everything went great and I was released to go home a couple days after surgery. Unfortunately less then 24...
Tucking the bag into my pants never worked for me. The output would struggle to make it past my belt line. I started wearing it sideways and wore a stealth belt. I found this way preferable. It got...
Very Impressive! It’s great to hear you are doing so well so quickly. My only caution would be to make sure it’s a light backpack. You don’t want to wreck the success of your recovery with a hernia....
I was in a similar place as you last winter. My UC spiraled out of control and the meds weren’t doing anything (even prednisone was failing). I spent a week in the hospital, went from a lean 160 lbs...
Running used to be my favorite. I completed 10 marathons (pre-UC) and once while in remission. Unfortunately, when I was flaring, there was no way I could enjoy running. I tried and tried but there...
Today is the 2 month mark for having a j-pouch. Also, one year ago today, I had kidney cancer surgery. It was a week after that surgery that I started the UC flare from hell. After 3 months of no...
Congrats! Glad to hear everything went well. I remember feeling that same way after the first step. I was in pain, but I wasn’t sick anymore. I was happy to make the trade. Be patient with yourself...
I don’t think the butt burn / itch is internal. I get it the worst when the pouch doesn’t fully empty on the first round and I have to make another trip or two. I think all the action/ cleaning tends...
One month ago yesterday I had my final surgery. While I never would choose to do that month again (especially the first couple weeks), I have to say that I am really happy with how everything is...