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Posted 8/28/2014 4:07 PM (GMT 0)
Hello! I am new to the forum and made an account to hear people's stories of surgery since I will be needing it soon. I am 18 and was diagnosed about 2 years ago with UC and have been on prednisone since then. Ive tried Apriso, Imuran, Humira, and Remicade none of which worked enough to get me off the prednisone. The next step is surgery. I know I am having it done because even if a drug works, I am only 18 and don't like the risks of being on them the rest of my life. I am just really nervous about the surgery and was looking for some people who have had it done and what it was like. I will be having the two stage j pouch surgery. Thanks!
Posted 8/28/2014 4:42 PM (GMT 0)
Hi Amanda and welcome!

First off, I'm sorry you are dealing with this so young and that the meds didn't work. I went thru them all too with no luck. I was 35 when I was diagnosed and 41 when I had my surgeries. I also had the two step J pouch procedure done laparoscopically. It was rough to get through but worth every minute of it. I love my j pouch. Good riddance to that crappy colon of mine!

Please let me know if you have any specific questions....I would be happy to try and help. There seems to be just a handful of us here that have had surgery. You may want to also check out jpouch.org. Lots of great, knowledgeable people over there too.
Posted 8/28/2014 5:00 PM (GMT 0)
Sorry you're going through this, I know how much it sucks to deal with this as a teenager. Surgery will get you your life back, and people generally only wish they'd done it sooner. It's definitely scary, but a life without UC will be so worth it. Honestly, part of me is just waiting to go through all the meds so they can take my colon and I can be done with this.

You'll have a better response posting on the ostomy forum of healingwell. I wish you good luck!
Posted 8/28/2014 6:28 PM (GMT 0)
I think you're making the right decision, especially in the case of long-term pred use. Young people can heal quicker and have better results. I wish I was younger for that reason, but at the same time, I know putting off surgery longer wouldn't help the situation if that's where things are heading. I've been luckier to have responded to some of the medications. I really hope you have great results. Research your surgeon a ton and check out j-pouch.org!
Posted 8/28/2014 6:54 PM (GMT 0)
Hi Amanda,

             Sorry to hear about your battle and the long term Prednisone use. I just recently went through the surgery for the same reason you did (I'm 28, had Colitis since 19), being on drugs for the rest of my life would without a doubt have caused me more issues than the UC itself would, not to mention the side effects of prednisone and whatever else they wanted to pump me full of.

            I won't get too long winded here, but I would say that I never could have imagined since I was diagnosed, that there would be a time in my life where the anxiety of Ulcerative Colitis, and not knowing if something I ate or did would cause me a flare up or not, would ever be something I could put behind me.. Then I had the surgery, best decision I ever made. I consider myself to be one who went through a very rough go, in the sense that I had pretty much every complication you could potentially expect, and I would do it all again in a heart beat. I no longer have to worry that a vacation planned 4 months down the road may have to be called off because a flare up, I no longer have to think about what I eat (although I still eat healthy), I no longer have to worry if i'm going to poop my pants if i'm out with friends during a flare up, and all that good stuff.

            Now specifically about the surgery, I did the 2 step. I was horrified by the fact that I could potentially have a bag on my stomach for the rest of my life if things didn't go well, then after the 1st step I can truly say that if I ever had to go back to the bag I could do it again in a heartbeat because of the quality of life it gave me. For both of the surgeries I felt very little pain, they take care of that pretty well. The first surgey they loaded me up on Morphine and the second they gave me an epidural instead, in place of the Morphine. I would opt for the Epidural is you have an option, I was wide awake and in no pain after the second surgeyr because of it, took me a solid day or 2 after the first surgery having used hte Morphine to really get rid of the grogginess.

            I said I wouldn't get long winded and I did lol, sorry. But if you hae any questions at all about the surgey, no matter how personal, feel free to e-mail me at [email protected] and I will answer anything you want to know. That goes for anyone else considering surgery too.

           

Posted 8/28/2014 7:03 PM (GMT 0)
Thank you all so much for the responses! It definitely makes me feel a lot better knowing about and talking to people that have gone through it. I'll definitely check out jpouch.org like a few of you have suggested! I really appreciate hearing from you all and your experiences. I have an appointment with the surgeon in about a week and I'll go from there. So we'll see what happens!
Posted 8/30/2014 8:04 PM (GMT 0)
Amanda,

Our situations situations sound very similar. I'm 32/m , and like you I was diagnosed with UC 2 years ago in 2012. Since that time I've tried many numerous medications, as you have, with only mild to non existent results. On May 31st of this year I had my last Remicade infusion, and like before having no relief, my GI told me to stop taking all my meds and told me surgery was the only way.

On July 31 2014 I had my 1st of three surgeries. My GI recommended the 3-step process because at the time I was extremely malnourished and very weak. I'm 5'7" and when healthy (pre-UC) weigh 140 lbs. At the time of my surgery I weighed a mere 103. I will admit that leading up to this point I was extremely frightened and nervous, having shed many tears, thinking that nothing will ever be the same again - but I was wrong, it does get better.

I'm now roughly 1 month post-op. It is definitely a bit different and I am still experiencing some mild surgery pains, but in regards to my UC I'm no longer running to the bathroom every 30-60 mins. My appetite is getting back to normal and I've gained about 10 lbs since being discharged - I can also eat just about anything I'd like.

I still have some ways to go before being "normal" again, but I can say it does get better. If you do opt for surgery please do not hesitate to reach out to me or others with any questions you have.
Posted 8/31/2014 3:12 AM (GMT 0)
Thanks a lot guys! I was just wondering about a few things. How hard is it get used to having the bag for a few months? I'm pretty worried about that. Also if there is anything I should do ahead of time to prepare physically for it to go smoother? Also, how long were you in pain for and how long were you all in the hospital for? Sorry for all the questions, just want to make sure I am as prepared as I can be :-)
Posted 8/31/2014 3:55 AM (GMT 0)
Getting used to the pouch really doesn't take that much time. For the first couple of times the nurses would empty it for me and I'd watch them do it. It seemed pretty easy to do so the next couple of times I'd do it myself while they supervised. Same with changing the pouch. They'd do it the first time, second time I halfway participated with supervision, and by the third time I was doing it on my own (albeit with my head slightly turned and my eyes partially closed when it came to cleaning off my stoma the first few times). There is also an ostomy nurse that should pay you a visit and she'll run through everything you need to know in regards to what items you'll need and proper hygiene and care. You'll get used to it. For me, I'd say it took me a good 2 weeks before I wasn't totally freaked out by it anymore. Now 1 month out, I make jokes about it with my family. Also, the Dr will probably be prescribing a house nurse that will visit you about twice a week for about the first month or so to ensure you have the hang of things and are not experiencing any complications.

As far as prepping before surgery, the only thing that comes to mind for me is to try your hardest to relax and have a positive attitude. You're not giving up or giving in - You're winning! You're telling your UC "You are not welcome here anymore, today things change. I control you now!".

My hospital stay was 10 days because I developed a small blockage the day after surgery. Some crappy know-it-all intern insisted I go off the drip dilaudid and switch to oral pain meds. Surprise, surprise, my guts weren't ready for that yet and the oral meds slowed things down enough to cause a blockage. They inserted a thin, long tube in the opening of my stoma (which didn't really hurt) and by that night things were moving again and the tube was removed. They then switched me back to the drip dilaudid, which I stayed on for roughly 4 days. Don't let them force you to change your pain meds if you don't feel ready yet, and especially so soon after surgery. Remember, it's your body and you know how best it feels and operates. I told the nurse I never wanted to see that intern again, which I didn't for the remainder of my stay.

In regards to how long you'll be in pain, I'd say for at least a good 2-3 weeks but it won't be any sort of excruciating, intolerable pain. The Dr will send you home with a good supply of pain meds and you'll notice that as each day goes buy you're feeling a little bit better and better and taking less and less of the meds. By the 3-4 week mark I say you'll be in relative comfort and pain med free with only some very minor short burst of pain every so often.

And before I forget, which my UC surgery friends failed to tell me, your Dr will probably be sending you home with a months supply of Lovanox injections that are taken subcutaneous in the skin, and they do hurt - not super bad, mostly a burn, but you'll get used to it. They say it's too prevent blood clots from forming, I say it's so they can mildly torture you...

Trust me, you will not regret your decision. Each day slowly gets better, and each day you are taking your life back.

Hope this helps and don't be afraid to ask anymore questions. I'm practically right there with you, so soon after my first surgery.
Posted 8/31/2014 4:42 AM (GMT 0)
Edited to add: ugh, didn't mean to post pretty much all of the same stuff Anthony did - his post wasn't there when I started my reply. Keeping it the same though just in case there's any extra info in here.

Don't apologize - you're asking all the right questions. And never be afraid to ask anyone (here, nurses, doctors, anywhere) any little question that pops into your head! The more information you have the better off you'll be!

Getting used to the bag wasn't that difficult. By the time I had surgery I'd had plenty of time to research it and was BEGGING for my colon to be taken out so mentally I think I was as prepared as I could be ahead of time.

I was also set up with an amazing stoma nurse while in the hospital (anyone having surgery should be as well - you'll meet with them to discuss appliances, stoma placements, etc) who explained how the bags worked and the different types extensively. She also hooked me up with tons of extra supplies and accessories to try out. When you're in the hospital, the nurses (regular floor nurses as well as stoma nurse) will help with emptying the bag at first, and the stoma nurse will also help and explain the changing of the wafer/bag while you're there. Afterwards you should be set up with a visiting home care nurse who will stop by every few days for the first few weeks to again check your vitals, check for any signs of infection or other post op complications as well as assist in the bag changes until you're comfortable.

There can be a bit of a learning curve with the changes, but as long as you stay patient with yourself and ask any questions and address any concerns you have you should get the hang of it pretty quickly. As far as wearing it and living with it, it really does become just another part of your body/everyday life. I didn't lie on my stomach at all, that's about it. I still wore all the same clothes, went out in public with no worries, etc. Again there are accessories such as belts/covers/etc to help with wearing and discretion as well.

Physically before surgery just try to be as healthy as you can. Your doctor will go over what meds they'll want you off of (usually everything) and when to stop them. Try to keep your diet and hydration up as much as you can. That's the only thing you can really try to have any control over depending on how sick you are.

I was in the hospital I think 8 days after the first surgery. They say average is 5-7 I think? On my third day post op I developed an ileus (my intestines woke up, I ate, then they shut down again and I started throwing everything up) which is really not too uncommon of a post op complication. Just make sure you take the progression from ice to liquids to foods really slowly and walk a lot. Even if it's just to the chair and back. Walk as much as you can. It really does help with everything, including pain. The ileus extended my stay a few days but after that I had no other post op complications other than a bladder infection from the catheter.

Pain wise I was a lot different than most others from what I've read here. I was in a lot of pain post op for a while. I was taking percocets for about six weeks post op and then after was still on extra strength Tylenol. Most people stop having major pain issues within two weeks post op I believe. Standing, bending, leaning, sneezing, coughing, etc will all cause discomfort for awhile, and in fact be advised against doing by your surgeon for the first few weeks anyway.

On the flip side, I had a three step process. Most say the second surgery is the most extensive/brutal/painful and for me it was nothing. I barely used the drip while I was hooked up to it (they'll hook you up to a pain pump for the first few days post op so you can press a button to administer pain medicine intravenously as you need it) and didn't take any pain pills at all after a week. So it really varies with each person.

Again, don't ever be afraid or feel foolish for asking any questions you might have. Sorry for everything you've been through!
Posted 8/31/2014 5:35 AM (GMT 0)
Hello!
I am 28. July 7th, 2014 I had step 1 of 3 procedure.
When having a three step procedure you have an "end ileostomy" and with a 2 step you have a "loop ileostomy" the loop is a litter harder to manager than the end, but you won't have it for long, so just focus on it being the middle man and eventually you will be pooping out your bottom again! :)

I absolutely love my end ileostomy and the life it has given back to me. So much that i am not going to continue with j-pouch surgery, but stick with the ileostomy permanently and have my butt sewn up!

As for the surgery itself: PLEASE email me with any questions!
I was scheduled to be in the hospital for 7 days. I had been in the hospital for 7 days the month before because I was so sick. So I really thought I would be there the expected time, but I wasn't! Only 5 days! Honestly, we have youth on our side! It makes recovery so much easier!

By Thursday (surgery was on monday morning) I honestly felt better than I had in over a year! And that was sitting in a hospital bed 4 days after surgery!! lol. So, yes... it's definitely an amazing surgery that can give you your life back!

I documented everything and all my feelings the whole time I was at the hospital so any little question you might have let me know.
Also check out the Ostomy forum here on healingwell. You can do a search through older posts, or even just browse through pages. Before my surgery on July 7th I asked A LOT of questions and got some really great in depth answers. I also have pictures I can share with you.. all sorts of stuff.

Please use me as a resource if you'd like! And good luck!! :)
Posted 8/31/2014 4:21 PM (GMT 0)

ArPAr said...
Edited to add: ugh, didn't mean to post pretty much all of the same stuff Anthony did - his post wasn't there when I started my reply. Keeping it the same though just in case there's any extra info in here.

Don't apologize - you're asking all the right questions. And never be afraid to ask anyone (here, nurses, doctors, anywhere) any little question that pops into your head! The more information you have the better off you'll be!

Getting used to the bag wasn't that difficult. By the time I had surgery I'd had plenty of time to research it and was BEGGING for my colon to be taken out so mentally I think I was as prepared as I could be ahead of time.

I was also set up with an amazing stoma nurse while in the hospital (anyone having surgery should be as well - you'll meet with them to discuss appliances, stoma placements, etc) who explained how the bags worked and the different types extensively. She also hooked me up with tons of extra supplies and accessories to try out. When you're in the hospital, the nurses (regular floor nurses as well as stoma nurse) will help with emptying the bag at first, and the stoma nurse will also help and explain the changing of the wafer/bag while you're there. Afterwards you should be set up with a visiting home care nurse who will stop by every few days for the first few weeks to again check your vitals, check for any signs of infection or other post op complications as well as assist in the bag changes until you're comfortable.

There can be a bit of a learning curve with the changes, but as long as you stay patient with yourself and ask any questions and address any concerns you have you should get the hang of it pretty quickly. As far as wearing it and living with it, it really does become just another part of your body/everyday life. I didn't lie on my stomach at all, that's about it. I still wore all the same clothes, went out in public with no worries, etc. Again there are accessories such as belts/covers/etc to help with wearing and discretion as well.

Physically before surgery just try to be as healthy as you can. Your doctor will go over what meds they'll want you off of (usually everything) and when to stop them. Try to keep your diet and hydration up as much as you can. That's the only thing you can really try to have any control over depending on how sick you are.

I was in the hospital I think 8 days after the first surgery. They say average is 5-7 I think? On my third day post op I developed an ileus (my intestines woke up, I ate, then they shut down again and I started throwing everything up) which is really not too uncommon of a post op complication. Just make sure you take the progression from ice to liquids to foods really slowly and walk a lot. Even if it's just to the chair and back. Walk as much as you can. It really does help with everything, including pain. The ileus extended my stay a few days but after that I had no other post op complications other than a bladder infection from the catheter.

Pain wise I was a lot different than most others from what I've read here. I was in a lot of pain post op for a while. I was taking percocets for about six weeks post op and then after was still on extra strength Tylenol. Most people stop having major pain issues within two weeks post op I believe. Standing, bending, leaning, sneezing, coughing, etc will all cause discomfort for awhile, and in fact be advised against doing by your surgeon for the first few weeks anyway.

On the flip side, I had a three step process. Most say the second surgery is the most extensive/brutal/painful and for me it was nothing. I barely used the drip while I was hooked up to it (they'll hook you up to a pain pump for the first few days post op so you can press a button to administer pain medicine intravenously as you need it) and didn't take any pain pills at all after a week. So it really varies with each person.

Again, don't ever be afraid or feel foolish for asking any questions you might have. Sorry for everything you've been through!

I see Vanco in your sig list, you have c diff as well? Thought I was the only unlucky one being double dipped... I spent months on that stuff and maaaaaaan is it expensive, even after insurance.

Now, no more Vanco!!
Posted 8/31/2014 11:32 PM (GMT 0)
Thanks so much for answering all my questions! Everyone on here is so nice and helpful. The take home injections scare me a bit just cause im not too fond of needles. But, I was on Humira for a while so hopefully i can handle it(: Im pretty nervous, but hearing all of you guys' advice definitely makes me feel better about the situation! I really appreciate it!
Posted 9/1/2014 5:18 AM (GMT 0)
Maverick - c diff is common with IBD. I also had c diff for a couple months!
Posted 9/1/2014 8:19 PM (GMT 0)

Amanda_Leigh09 said...
Thanks so much for answering all my questions! Everyone on here is so nice and helpful. The take home injections scare me a bit just cause im not too fond of needles. But, I was on Humira for a while so hopefully i can handle it(: Im pretty nervous, but hearing all of you guys' advice definitely makes me feel better about the situation! I really appreciate it!

I only had to take Heparin injections while I was in the hospital, once I was up and walking around the risk of blood clots went down. The nurses did the injections for me.
Posted 9/1/2014 8:27 PM (GMT 0)
Hi Amanda:
As I am still in the hospital with my daughter after step 1 of a three step surgery, I am not an expert, quite yet, lol. I am however, pretty good at recognizing when it is time to get your life back and stop giving your full attention to your colon and its pain. We were there. Lots of posts from me and others like us may help you know when and if it's right for you.
Do seek the best surgeon you can get to,make sure you know the pros and cons of 2 vs 3 steps(ours insisted on 3), and do not wait until you are too sick.
My daughter is already feeling better, may go home tomorrow night, and is only on oral pain meds. Walking straight, eating a small amount, and has her almost normal face back( the one that wasn't pinched & furrowed in pain). The bag isn't a highlight, but we view it as a curiosity...quite fascinating and helpful.
Hugs and best to you in whatever comes your way. Young and strong folks heal well !
Posted 9/3/2014 12:14 PM (GMT 0)
Hi Amanda: You have gotten a lot of great advice on here already but just wanted to send you good wishes. I think you are going to be really happy after you have your first surgery because you are going to feel so much better. I am 34 years old and am having the 3 step J-pouch surgery because I was too ill to do it in 2 steps. I had the first step in June at the Cleveland Clinic and the plan is to do the 2nd step in October if my nutrition is improved. I was terrified to have the surgery - fear of the unknown as I had never had a major surgery before. But I can say now it was the best thing for me to do. I had minimal pain and was amazed at the amount and type of food I was getting at the hospital prior to my release- things I hadn't been able to eat in months. I feel so good, I can work and eat. I don't have to worry about where every bathroom is. I can drive my new car without fear of ruining the seat! I was worried about caring for the ileostomy but they aren't going to let you leave the hospital without you knowing how to care for it. I also had a home health care nurse that watched me do it the first couple of times. Now it is no big deal! I think you are doing the right thing by choosing surgery. You are too young to live like you are now!
Posted 9/3/2014 9:35 PM (GMT 0)
Thanks guys! Met with surgeon today and since I am only on 2.5 mg of pred right now, and am right around the point where I should be seeing a difference because of the remicade, I am going to try to come off pred and do my next infusion. Since I am not horribly sick right now, surgeon wants to wait a few weeks, see if I get of pred and how I feel, then we will meet again and probably schedule surgery if I am not feeling well.
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