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My surgery journey

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Ulcerative Colitis
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Posted 2/7/2018 5:20 AM (GMT 0)

notsosicklygirl said...
I am so happy for you to find something that works. That's usually the case, something works, even if it's not your ideal thing, there is something. That is what is most important. I hope you can get even longer wear time, and before you know it, you will be ready for your takedown.

Plucky, it's nice to hear from you. How are you doing overall? I am sorry to hear you've had blow outs sad


Hey NSSG! Not trying to "hijack" Kanva's thread but for the record I am good! Finally weaned off prednisone & definitely experiencing adrenal fatigue as well as some rectal inflammation, but it's all manageable. Trying to stop stuffing my face and get in shape šŸ˜
Posted 2/7/2018 5:58 PM (GMT 0)
Thanks for all the support, everyone! It helps to have other people who have gone through this.
Plucky, itā€™s so great to hear youā€™re doing well, and yay for getting off of prednisone! Hopefully it will work its way out of your system quickly. I know it took me months to feel anywhere close to normal after I stopped.
Posted 2/9/2018 4:01 PM (GMT 0)
Big milestone for me today, giving me hope that there is light at the end of the tunnel:
Two weeks and two days after surgery, I took a shower this morning and ... it didnā€™t make me exhausted! Then I went up a flight of stairs and was only slightly winded! Woo boo ... Iā€™ll take the small victories!
Posted 2/9/2018 5:03 PM (GMT 0)
That's great. I am happy you're feeling stronger. It's funny you mention getting so tired quickly, I remember when I was like that. I haven't thought about feeling that way in so long. I am generally fatigued, but going through the surgeries put me on another level.
Posted 2/9/2018 5:13 PM (GMT 0)
Itā€™s funny how well our brains can forget adversity like that, isnā€™t it?
Posted 2/9/2018 5:16 PM (GMT 0)
Yay for improvement Kanva! Have a great weekend!
Posted 3/6/2018 2:58 AM (GMT 0)
Well, Iā€™ve been away from the forums for a bit. My sister died of colon cancer two weeks ago, so itā€™s been a blur. I started back at work full-time today. It was a relief to get back to some semblance of normalcy, but the fatigue is hard to battle. I think that if I hadnā€™t had grief to deal with, I would have been OK, but itā€™s been a setback for sure.
Posted 3/6/2018 3:52 AM (GMT 0)
I am so sorry to hear about your sister Kanva. I cannot imagine how difficult that is. Take it easy, and don't work too hard, you will regain strength. It's just a tough time you're going through.
Posted 3/6/2018 4:52 AM (GMT 0)
Kanva, sorry about your sister, that is a tough thing to deal with. Take things slow and donā€™t let work stress you out. Focus on your health and family. The word brave is overused a lot but you certainly are brave.
Posted 3/7/2018 12:44 AM (GMT 0)
My condolences on the loss of your sister. I hope you allow yourself time to grieve and don't push too hard to be at work right now.
Posted 3/7/2018 4:37 PM (GMT 0)
I'm sorry for your loss Kanva. Take things day by day.
Posted 3/12/2018 1:34 AM (GMT 0)
Thanks, everyone. I survived my first week back at work, but not too well. I donā€™t have anything left by the time I get home. I know I just have to keep moving forward, so thatā€™s what I try to do. I keep telling myself itā€™s getting better slowly, even if it doesnā€™t feel like it. I also feel like Iā€™m failing my family ... doesnā€™t seem fair to keep being sad and tired. I tell myself itā€™s OK to take time to be sad, but I feel like I should be back to ā€œnormalā€ by now. Self-imposed, I know, but sometimes those are the hardest expectations to escape from.
Posted 6/2/2018 4:30 PM (GMT 0)
I'm headed to my third and last surgery next week at the Mayo Clinic (takedown of the j-pouch). It's hard to believe that I'll be done with ostomy supplies after this (fingers crossed).
I'm dreading the surgery, honestly - I think it will just be a flashback to this winter and the second surgery, which was hard and complicated with my sister's death. I'm just starting to feel "normal," and now I'll have to build back up all over again.
I know this ultimately is a good thing - I'm progressing through my UC journey, and the end is in sight. It's just hard to get excited about the prospect of anesthesia time, recovery, and diarrhea! smile
Posted 6/2/2018 6:31 PM (GMT 0)
Best of luck. The closure is actually really easy, but the process of healing after can take some time. We just had a member do takedown though, and he's doing fantastically well, you will do great too.
Posted 6/3/2018 1:40 AM (GMT 0)
Got mine in July-Lets do it
Posted 6/3/2018 9:25 PM (GMT 0)
NSSG: Iā€™m definitely a little nervous about the after-surgery adjustements. Its hard to imagine what it will be like to have a digestive system again. But knowing that Iā€™m healthy going into it helps.
3TC: You give me courage! Strength in numbers, right? smile
Posted 6/5/2018 1:09 AM (GMT 0)
No doubt in my mind surgery is the right choice,I'm 59yo male i want to live,i want to go to Yankee games,i want to go to Ranger games[can u tell I'm a NYer]. UC held me back fearing i would have an accident.No more anxiety,no more stress.Surgery 3 in July.What should my first mean be once i get out of hospital??? Nothing can be as bad as 32 yrs with this UC monster-GOOD LUCK ALL
Posted 6/10/2018 11:46 PM (GMT 0)
Well, my third surgery is in the books. Takedown was Friday afternoon, and I was discharged today (Sunday). Pretty quick turnaround, but I felt so much less fuzzy and painful than I did with the first two surgeries.
I have had quite a bit of swelling and bloating, but itā€™s slowly getting better. My appetite is very minimal, but I am passing stools without difficulty.
The drive home is probably the worst part so far ... itā€™s not comfortable to sit in the car with a bloated and gurgly abdomen, and we have an 8-hour drive. We broke it into two days, and I will be so glad to get home and get on with life!
Posted 6/11/2018 12:43 AM (GMT 0)
You had different anesthesia for your 3rd surgery than the first two surgeries; I makes a difference. Iā€™m sure that you werenā€™t as active the first few days after first two surgeries.

Rest up, youā€™ll feel better soon.
Posted 6/11/2018 12:16 PM (GMT 0)

Kanva said...
Well, my third surgery is in the books. Takedown was Friday afternoon, and I was discharged today (Sunday). Pretty quick turnaround, but I felt so much less fuzzy and painful than I did with the first two surgeries.
I have had quite a bit of swelling and bloating, but itā€™s slowly getting better. My appetite is very minimal, but I am passing stools without difficulty.
The drive home is probably the worst part so far ... itā€™s not comfortable to sit in the car with a bloated and gurgly abdomen, and we have an 8-hour drive. We broke it into two days, and I will be so glad to get home and get on with life!

Congrats! Glad it went well. The drive sounds tough!
Posted 6/11/2018 4:23 PM (GMT 0)
Turns out that having my intestines wake up has given me some negative flashbacks to pre-surgery. The gurgling, some cramping, needing to restrict my diet, and increase in urgency ... It's nowhere near what it was like pre-surgery, and I know it's just recovering from anesthesia, bit it's hard to not have negative associations from life before.
Posted 6/11/2018 4:56 PM (GMT 0)
You've got brand new plumbing. Give it time. I can still see improvement for me and it's been more than 1.5 years post op.
Posted 6/11/2018 5:18 PM (GMT 0)
Congrats on your surgery and being UC-free. I am glad your surgeries all went well. You are one tough cookie, resilient and brave. Take care of yourself.
Posted 6/11/2018 7:07 PM (GMT 0)
Congrats! I am truly excited for you. Please keep us posted to how you adjust to your new system. smile
Posted 6/11/2018 8:06 PM (GMT 0)
Congrats on having the final step.

In the beginning, i had a lot of those weird gurgle pains and frequent trips, my butt was also on fire, but I could eat well again, and that was a positive. it takes a lot of time to heal.
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