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Surgery scheduled - Moving on!

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Posted 2/16/2018 10:33 PM (GMT 0)
After my final Hail Mary pass (Entyvio) has done nothing to put a dent in my flare, I've decided to move on to surgery. I met with surgeon in the beginning of February. He says he would do the 3 step based on my current health (I am happy about because I haven't decided yet between a perm ileo or jpouch) He scheduled me for the Feb 22nd but was really concerned how much longer I was going to make it before I was looking at an emergency situation. My symptoms seem to be steady - 12+ bloody painful BM's a day. I think the only thing holding my colon together right now is the prednisone.
So, less then a week away. It's Becoming very real. I'm super freaked out, but longing for some quality of life back. To think this time last year, I was at the peak of fitness (11 marathons under my belt) since then have withered into a shell of myself. I've got four young kids that need a dad and a wife that needs her husband back! It's time to move on!
Posted 2/16/2018 11:33 PM (GMT 0)
Hope all goes well for you. Entyvio was my hail Mary too or as my gastro said a "rescue therapy". It failed. I decided on a perm ileo and for me it was the right move. I find the appliance to be very manageable, and I'm back to working out, playing sports and working. Most importantly, I'm not in pain! Coming up on my 1 year anniversary since surgery. Wow, what a difference a year can make! Hang in there, the beginning of your new lease on life is near!
Posted 2/17/2018 3:43 AM (GMT 0)
My story is in my signature. While surgery is not what we want, or expect, for me, it has been such an incredibly liberating change in my life. I love living without the challenges of being chronically ill. While people think being in remission is liberating, in my opinion, it's not as liberating as being done with the illness all together. I guess it is all perspective, and I would have been thankful to be pump whatever it takes into my veins and go once a day, but the fact that that is temporary, and costs a lot in time and money, is very unattractive when you really take a look from an unbiased perspective. Not to say life after surgery is perfect, it's not, but when it comes to spending thousands on drugs, doctors, and monitoring every year, and still having symptoms, and lost time, I think a few extra trips to the toilet is pretty mild to eliminate all that. Just my opinion. If I was unemployed, and uninsured tomorrow, I would be okay. I like that. I don't care what remission you're in, you need whatever it is that keeps you there. I don't want that kind of expense on me for the rest of my life. I did three steps, and I considered stopping. I felt really well after the first step. I am happy i continued. needing supplies is another inconvenience, but at least it is predictable. I think you will know if you want to continue or not.
Posted 2/17/2018 4:15 AM (GMT 0)
I had my surgery last month and I feel great! Since you’re having the three step you will have more time to figure out if you want the perm ileo or j pouch, both have their ups and downs! My quality of life is great now and I eat what I want and don’t have to worry about a bathroom or staying in the hospital! I had to quit my job and take online classes because I couldn’t do anything at all except for sleep and go to the bathroom when my disease started to downspiral. When next semester comes I can proudly say I will be able to make it to campus and have another job by then of course, without any worry! smile when I got my surgery I felt clean, I don’t know how to explain it but it was a great feeling.
Posted 2/17/2018 2:33 PM (GMT 0)
Had colon removed Jan 9th. Wasn't any emergency. Colon kind of stopped working. Wasn't any blood. Pred kept inflammation from getting out of control. Surgery has been fairly easy for me. Not much pain at all in hospital or since I got home. Adjusting to the bag is pretty easy. Surgery #2 in April. #3 in July. Good luck. Keep us posted
Posted 2/17/2018 11:54 PM (GMT 0)
Good luck, please let us know how it goes!
Posted 2/17/2018 11:57 PM (GMT 0)
Thanks for the great replies. You’re experiences give me so much hope and help me to approach this as positive as possible.

Does anyone have experience tapering off prednisone after surgery? I’m going into surgery on 25mg a day. I started at 40mg back in November tapered and stuck at 25mg for the past month (Below that my symptoms starts threatening at trip to the hospital). Just curios if 3 months requires the same super slow taper? Anxious to get off them but don’t want to do anything dumb.
Posted 2/18/2018 12:12 AM (GMT 0)
I’m still tapering off my prednisone, I went in on 80mg of IV steroids, they made me taper down by tens at home, I’m at 20 now and then they told me to taper down by 5mgs then by one mgs so 15 for a week 10 for a week and so on, don’t taper really fast or else you can go into shock, I was in the icu for a week because I tapered too fast back in November! Not fun!!
Posted 2/18/2018 9:49 PM (GMT 0)
Run,

I found tapering (steroid withdrawal) the worst part of my colectomy. I tapered too fast and my whole body hurt, I was moody, I always felt too cold, and then I'd be sweating, I couldn't sleep but was always tired.

Ask your surgeon or GI for a slower taper schedule if you are concerned. I was on Steroids for a long time prior to my surgery.
Posted 3/3/2018 8:12 PM (GMT 0)

3timechamp said...
Had colon removed Jan 9th. Wasn't any emergency. Colon kind of stopped working. Wasn't any blood. Pred kept inflammation from getting out of control. Surgery has been fairly easy for me. Not much pain at all in hospital or since I got home. Adjusting to the bag is pretty easy. Surgery #2 in April. #3 in July. Good luck. Keep us posted

Where are you surgeries being done?
Posted 3/3/2018 8:16 PM (GMT 0)

ks1905 said...
Run,

I found tapering (steroid withdrawal) the worst part of my colectomy. I tapered too fast and my whole body hurt, I was moody, I always felt too cold, and then I'd be sweating, I couldn't sleep but was always tired.

Ask your surgeon or GI for a slower taper schedule if you are concerned. I was on Steroids for a long time prior to my surgery.

How much prednisone were you on? How long? How much at surgery?
Posted 3/3/2018 9:59 PM (GMT 0)
My surgery was at NY Presbeterian.They have an area where its nothing but Colorectal surgery patients.Everything went great
Posted 3/4/2018 7:22 PM (GMT 0)
My surgery was done at LDS hospital in Salt Lake City. I had the option to foto a surgeon and hospital closer to my home but after researching and getting several recommendations, I decided on going to LDS. Totally happy with my choice. My first surgery went great, no complications so far (knock on wood). I'm recovering well and looking forward to having prednisone out of my life. I started prednisone back in November and had tapered down to 25mg before surgery. I was on 20mg for a 5 days following surgery (they raised during surgery with I've steriods). I then dropped to 10mgs for a week. On Tues, I will drop to 5mg for a week, Then 2.5mg for a week, then done! That's the plan anyway, so far so good.
Posted 3/5/2018 1:35 AM (GMT 0)
Same with me,I'm doing fine.Went back to work after 4 weeks,I'm a contractor in New York so let my guys do physical work.I was on 10mg of Pred when i had surgery so wasn't much tapering left.Like you i choose hospital not close to me, i went into Manhattan bc they do many more colorectal surgeries then on Long Island where i live. My Gastro who i have had since 85 suggested i go into city bc they do more surgeries then Drs out here.Very happy with my decision.Have check up Friday where we will schedule 2nd surgery.Hope for best for me and you
Posted 3/14/2018 8:06 AM (GMT 0)
I’m glad your first surgery and recovery went well. I had Surgery 1 at the Mayo in May 2017, Surgery 2 in January, and will have Surgery 3 sometime May-June.
Tapering off the prednisone after the first surgery was hard. It took me several weeks, maybe a couple of months. Even after I was done, though, I had side effects for months: joint pain, fatigue, insomnia, mood swings. I hope I never have to take the stuff again!
Recovering from the second surgery has been easier in a lot of ways without prednisone in my system.
I am so happy that I have chosen the j-pouch. I got my life back, and I didn’t even realize how far gone I was until after the first surgery. An ostomy isn’t my ideal, but I’d take it over UC any day, hands down.
Good luck on your journey, and keep us posted!
Posted 3/15/2018 11:02 PM (GMT 0)
3 weeks post Surgery 1. Recovery has been better then I expected. I still have some occasional pain but nothing I need medication for. I actually went back to work on Monday (part time). It has been great be be out of the house.

I am still refusing to even think about what step to take next for surgery. My family and I need a break from all this for a while. We’ll see once I am FULLY recovered. I am sooo looking forward to being entirely off prednisone. This is my last week. I’m currently at 2.5mg and will be done by next Monday. My hands still shake and I sleep cant sleep worth crap, but the brain fog and blurred vision has gotten way better at the low dose.

Kanva, how come so long in between step 2 and 3? I totally hear you about not realizing how sick you were until after your surgery. Looking back at all the pain, accidents, just being sooo sick all the time, I can’t believe that was my life. It is so good to be free from that. It really feels that I’ve been brought back from the dead (in fact, I named my stoma Lazarus).
Posted 3/16/2018 12:53 AM (GMT 0)
That's great to hear you're doing so well. Getting off prednisone is such an amazing feeling, but another amazing feeling is knowing you're not likely to need it again anytime soon, or any drugs possibly. I haven't really taken anything, in 3 years, since my takedown. I was lucky that I wasn't on prednisone when I had surgery, but I was quite ill with an 18 month flare up, and I was refusing prednisone, so I wasn't in the best shape regardless. I kind of rushed through the surgeries. I wanted to get it all done in a calendar year because of insurance and deductibles. It ended up working out that way for me, but I may have taken my time if insurance wasn't a consideration. I like Lazarus for your stoma. Very cute.
Posted 3/16/2018 2:55 AM (GMT 0)

RunJerRun said...
3 weeks post Surgery 1. Recovery has been better then I expected. I still have some occasional pain but nothing I need medication for. I actually went back to work on Monday (part time). It has been great be be out of the house.

I am still refusing to even think about what step to take next for surgery. My family and I need a break from all this for a while. We’ll see once I am FULLY recovered. I am sooo looking forward to being entirely off prednisone. This is my last week. I’m currently at 2.5mg and will be done by next Monday. My hands still shake and I sleep cant sleep worth crap, but the brain fog and blurred vision has gotten way better at the low dose.

Kanva, how come so long in between step 2 and 3? I totally hear you about not realizing how sick you were until after your surgery. Looking back at all the pain, accidents, just being sooo sick all the time, I can’t believe that was my life. It is so good to be free from that. It really feels that I’ve been brought back from the dead (in fact, I named my stoma Lazarus).

Phoenix would be good too.
Posted 3/16/2018 12:23 PM (GMT 0)
Glad you're doing well!
Posted 3/16/2018 3:17 PM (GMT 0)
RunJerRun -
My surgery schedule has been more drawn out than I would like.
I was supposed to have Surgery 2 in October, but I got a blood clot three months after the first surgery. Bleh. Luckily, it was a partial clot that didn't cause damage, and it responded to blood thinners.
I could have Surgery 3 as soon as early May, and I would love to do it as soon as possible, because the positioning and behavior of the ostomy after this step has been more troublesome than after the first step. But I have missed out on so much stuff with my family, and I don't want to miss out on the end of another school year and all those activities. So I'll wait until June, when it will only interfere with summer camps and vacation - ha. But I keep telling myself that after this, my life won't be interrupted with chronic illness and recovery anymore, so I won't miss stuff forever!
Posted 3/18/2018 12:05 AM (GMT 0)
That makes total sense to me. I feel like I have missed out on so much of my kids lives because of UC. Surgery is rough and recovery takes a long time, even though the end result can help with quality of life. What ever road I go down, I'm spacing it out and trying to time it so I miss the least amount. Even though this summer seems like a long way away, it will be here before you know it and you will be done! Pretty exciting!
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