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GI informed me today that I'm a candidate for surgery, need some support

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Ulcerative Colitis
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Posted 9/14/2012 9:23 AM (GMT 0)
Hey so earlier today I spoke with my GI who informed me I am a candidate for surgery for my UC. I have been on asacol, tacrolimus, 6mp, remicade, cortifoam, enemas, the list goes on and on. My symptoms started to appear in the fall of 2009 and I was diagnosed with UC that winter. Since that time I have been completely stereoid dependent. Everytime I get under 10mg prednisone I start to flare up again even after weening myself off extremely slowly.

The 6mp showed some improvement, I went from going 12 times a day to about 6-8 yet it's just not enough. I tried the SCD diet yet found it extremely difficult and did not see enough results after being on it for over a month.

They are leaning towards the J-Pouch surgery which requires 2 procedures and a 3 month wait before the 2nd surgery. At this point I'm leaning towards it yet just want to get some feedback on how people planned this out, etc.


***PLEASE PLEASE PLEASE I do not want to hear any graphic horror stories about this surgery gone wrong, I'm just looking for support and some positive experiences to help my mental state going into this. I know it has not gone well for some people yet I want to know how people deal with being sidelined for 12 weeks? I am completely independent and afraid I wont be able to take care of myself during this time.
Posted 9/14/2012 12:07 PM (GMT 0)
doorpuck, you will find many jpouch success stories on the ostomy forum and quite a few memebers here who have had surgery. To be honest, most people who have surgery don't continue to post. We have a handful of members who remain active after surgery and it's great becasue it is a reminder that surgery can be a great solution, especially in the case of pred dependency. After surgery, many people go 6x a day but it's not urgent and there are no uc symptoms. I am sure you will do fine, it's just a long process.
Posted 9/14/2012 1:30 PM (GMT 0)
duckpoor-
I think you should read posts on the Ostomy forum that discuss both good and problematical outcomes before fully committing to a surgery that is not reversible.
My GI told me that the last person he recommended for the surgery was in the hospital for 25 days after the first surgery. You have to be realistically prepared to deal with possible complications.
Trying diet modification for a month is not enough. Sometimes it takes 6 months or more to see significant improvement.
IMO, you have not tried everything before opting for an irreversible surgery. What about LDN?
Please read the 11th post under "Ulcerative Colitis Resources" to read "suggested" alternative protocols tried by InSoFla.
I strongly suggest you do so.
Best of luck.
Posted 9/14/2012 1:32 PM (GMT 0)
duckpoor have you every tried anitbiotics? I always ask because the Triple Antibiotic Therapy helped me, but didn't get rid all of my symptoms, but it helped. JW if you ever tried antibiotics? I do believe whatever choice you make, you will be well. Hang in there!
Posted 9/14/2012 1:44 PM (GMT 0)
Jpouch surgery was a blessing for me. I've had my jpouch for 11 very happy years. Make sure you consult with a top CR surgeon in your state.

Sue
Posted 9/14/2012 2:13 PM (GMT 0)
Personally I have been through the gambit of meds as well but I am just not ready for surgery. I have had UC for 14 years. The decision to have surgery is an incredibly personal decision and if/when I ever get there I know it will be a struggle. I agree with another poster above that diet modification, according to my GI and a nutritionist can take ATLEAST 90 days before any real results can be seen. 3o days is not close to enough time. Again it's up to the individual though. Personally I would try everythig under the sun before I decided to live my life with a pouch or bag. I do not begrudge or blame those who choose that route and it seems many are happier but it scares the hell out of me right now at my relatively young age of 39 and I personally am just not ready yet. I truly wish you well and hope you have the support you need, it takes alot of courage either way. Good luck
Posted 9/14/2012 3:25 PM (GMT 0)
I had the same 2 step j pouch procedure your speaking of. It has been a blessing! Yes, it's scary as heck and it's no walk in the park but once you are done with the surgeries....that's it...you are done with UC forever. From start to finish for me was 3.5 months so the process isn't all that long. That's such a short amount of time compared to all the years I was dealing with UC. Plus I was up and about in between surgeries going about my day. Please feel free to fire away with any specific questions you may have. :)
Posted 9/15/2012 6:57 AM (GMT 0)
Thanks for all the support. You're right, the diet probably needs more then 30 days yet the fact is I had an extremely difficult time staying on a diet as disciplined as the SCD diet. When I had a flare up it was very discouraging for something that requires so much commitment.

ByeByeUC, I have several questions since you mentioned you had the J-Pouch surgery already,

-Why did your surgery require a 3.5 month downtime? I'm being told 12 weeks by my GI, I just want to know why the extra 2 weeks

-After the first part of the surgery how long were you in the hospital?

-After leaving the hospital were you able to take care of yourself or did you have others helping you? If so how long until you were fully independent again?

-How long were you sidelined by the first part of the surgery? I'm able to work from home and run my business from any computer, I'm just trying to get an idea of how long I will be out of commission and unable to earn an income. Obviously my health comes before money yet it's a concern of mine.

-After part 2 of the surgery how long did it take to recover?


Right now I'm looking at probiotics such as VSL 3. My GI is very by the book and gives me a hard time whenever I bring up any of these "alternative methods" yet the fact is he's failed to cure this disease and is suggesting I get surgery so I'm ready to try anything. Does anyone have any other suggestions of what to try and how to get started?
Posted 9/15/2012 12:04 PM (GMT 0)
1. I had 3.5 months in between surgeries because I had a complication after the first surgery. I developed an abscess/infection in my pelvic area that had to be drained. Since the abcscess was in a tough to reach place, I had to have the drain in for 6 weeks. (I went home with it) That was no fun at all but it was addressed and taken care of without further issue. So that set me back a little bit.

2. I went home from the hospital on the 8th day after the first surgery. I had mine done laparoscopically which really cuts down on your pain level afterwards and reduces the chances of adhesions forming. If you can get a super experienced surgeon that happens to do the procedure laparoscopically, I highly recommend it.

3. After I got home from the first surgery, my husband was around for a few days to help (we have two grade school age kids) me out but he had to go back to work since he was off the entire time I was in the hospital. I was able to get up and make myself something to eat or for the kids and small things like that. I couldn't drive for 4 weeks though. That's pretty standard after any major surgery.

4. At the time I wasn't working so I didn't have a job to return to. Just my kids which can be a tougher job! After a few weeks I felt much better and I was going about my normal daily routine more. So I would say you would need a good 3 or 4 weeks before you really feel like doing any kind of work. I had that complication so if I didn't have that I may have felt better sooner. I think a lot of people think that you are stuck in bed the whole time in between surgeries and that's not the case at all.

5. Now everyone is different but for me step 2 was a breeze. I was in and out of the OR in 30 minutes, very minimal pain, my bowels woke up after about 24 hours and I was home on the 4th day. The first week was a little nutty but it quickly settled down and in two weeks I was back to my crazy schedule running the kids around to their activities. That was my experience. Others may have had a rougher recovery after takedown that took longer. We all eventually end up at the same place though. UC free!

Good luck with everything. It's not easy to make the descision to have a major surgery like this. I hope this helped answer your questions. I exhausted all my options so I didn't have much of a choice. I even had my sister who is a long time j poucher begging me for years just to have the surgery done but I had to be ready and I wasn't ready until I tried all I was willing to try first. Best wishes!
Posted 9/15/2012 2:57 PM (GMT 0)
Surgery was the best choice for me, and I have NO regrets at all. I am a much healthier and happier person.

The only wish I have is that I hadn't spent so much time trying so many different meds and alternatives. I realize that at the time I wanted to make sure I tried everything, but in hindsight, i should have done it sooner.

Get an experienced surgeon and things should go smoothly.
Posted 9/15/2012 5:27 PM (GMT 0)
Just wanted to say that the scd doesn't work for everyone. There are other diets out there that may be helpful, or may not. It didn't help me, and was kind of depressing. I've had success modifying my diet using a food journal but this doesn't really work if you're having bloody diarrhea all day... You'll never find out what is helping or hurting if you can't see results in the bathroom.

But being on pred this whole time, as you know, is not a good thing.

I agree, check out the stuff mentioned by ItIsAlwaysSomething on the resources link.

I don't know if I'll ever be mentally ready to get surgery, but I know I'll choose it before certain other drugs so maybe I'll be there one day.

Thanks so much to all those who've had the surgery who have commented here, this is such a great forum.

Good luck with your decision and I hope you find some relief, one way or another, soon!
Posted 9/15/2012 7:07 PM (GMT 0)
     Find the best surgeon who has done plenty of this type of surgery.  I was not a candidate for j-pouch.  Maybe if I hadn't waited till I was almost at death's door (unbeknownst to me), they would have been able to do it.  However, I was just soooo sick of being sick I had already gotten my mindset to having a "bag".   Best decision EVER regarding my health.  No horror story here yeah .
Posted 9/15/2012 7:17 PM (GMT 0)
Thanks I appreciate all the input from everyone. I've setup a consultation with a surgeon for next week yet I'm still very much on the fence about having this operation.

Someone had mentioned vsl3 & rifaximin. I definitely want to give vsl3 a try yet I'm not sure how much to take/where to start. Does anyone have any suggestions in regards to that?

Another question or 2 I had for anyone that's been through the surgery, did you empty the bag yourself or did you have assistance from someone else?

-What were your dietary restrictions after the surgery and how many times did you need to go after the surgery?
Posted 9/15/2012 7:33 PM (GMT 0)

doorpuck said...
Thanks I appreciate all the input from everyone. I've setup a consultation with a surgeon for next week yet I'm still very much on the fence about having this operation.

Someone had mentioned vsl3 & rifaximin. I definitely want to give vsl3 a try yet I'm not sure how much to take/where to start. Does anyone have any suggestions in regards to that?

Another question or 2 I had for anyone that's been through the surgery, did you empty the bag yourself or did you have assistance from someone else?

-What were your dietary restrictions after the surgery and how many times did you need to go after the surgery?

Definately give the vsl3 a shot. It's by prescription I believe or at least it was when I tried it. Your doc will give you instructions on how much. It was was one of the many things I tried that didn't work. And I paid out of pocket for it because my insurance didn't cover it. It's VERY expensive.

I had the nurses show how to change my bag and appliance and I was fine doing it when I got home. I emptied it myself. I also had a home nurse come a few times after I got home to make sure I was doing it all right. That was a big help and it just made me feel better.

I had no dietary restrictions after surgery. I just started out slow with small amounts of food until I felt more confident.

I use the bathroom an average of 4-6x a day with no urgency. I usually go when I have to go pee. It's kind of hard to explain. I could go right now even though I don't have the urge to.
Posted 9/15/2012 8:03 PM (GMT 0)
Seems to be sold here...

http://shop.vsl3.com/vsl3-c2.aspx

I just don't know which one to buy or how much to take

My GI is not very helpful, anytime I bring this stuff up he says it's a scam and a waste of my time.
Posted 9/15/2012 8:29 PM (GMT 0)
Oh ok...when I took it it was by prescription. Sorry I do not recall how much I took....it was a while ago. Hopefully someone will be along with that info. Maybe start a new thread with vsl3 dosing in the title. Good luck.
Posted 9/16/2012 1:26 AM (GMT 0)
     Here's a bit of hope for you.  I have a friend who is doing fantastic on VSL#3 and Rowasa enemas.  She was in remission for ten years while on 6MP, but for some reason or other, her GI doctor took her off it.  She flared almost immediately, but now is doing well on the VSL#3 and Rowasa.  Good luck to you!!!
Posted 9/16/2012 1:35 AM (GMT 0)
I just had step 1 (colectomy only) of 3 recently. When I was in the hospital an ostomy nurse came and checked my surgery set-up the first day. Alot of times the surgeons don't quite put on the right appliances for your stoma (there are many many wafer/bag options available). I didn't need changed at that time. Once my bowels started moving, the regular nurses showed me how to dump it and clean it. After that, I was fine dumping it on my own. Then an ostomy nurse showed me the next day how to change the appliance and "fit" me with a system. The day I was released, yet a different ostomy nurse checked out my system and had me participate in the changing. They sent me home with supplies and a 1.5 page instruction sheet. I also had a home health nurse scheduled to come out once a week for a few weeks to help, but I ended up having to change the bag on my own due to a bag leak. So after that I was fine on my own. Unfortunately my stoma has shrunk back into my skin so I have an appointment with an ostomy nurse next week to get refit for a new bag system.
Posted 9/16/2012 12:20 PM (GMT 0)
     Indianguy...anything is worth a shot huh?  When I was going to my GI doctor, his nurse mentioned a patient who went into total remission by drinking aloe vera juice.  I never tried it, but then, it was my rectum that was diseased.  This guy had pancolitis.
Posted 9/17/2012 2:47 AM (GMT 0)
All great suggestions, I really can't thank everyone enough for posting. Going to look into all of these options this week & see if anything makes an impact.
Posted 9/17/2012 1:59 PM (GMT 0)
I was on the doorstep for surgery and I turned my UC around, avoiding surgery altogether which to this day leaves my GT doc in disbelief.
If you can find a balance in your life, in your diet, in your activity levels, you can heal yourself and I am living proof of that.
Posted 9/17/2012 3:07 PM (GMT 0)
Definitely weigh all the pros and cons. The biggest thing is you must be ready and accepting of having surgery. Nobody but you can make that decision. Definitely find an EXCELLENT CR surgeon and do your homework. If and when you make up your mind even though you are a good candidate for the jpouch procedure do your research before the fact too so you are as well prepared as possible. It really makes a difference adjusting. And even though the ostomy and the pouch (bag) will be temporary it is important to care for it just the same as if it were permanent. I say this so that you have the easiest time with it and avoiding skin issues. There is a learning curve and by the time you are ready for the reversal it will be done and over with.

This UC forum was my/our lifesaver while my husband battled with UC. Having tried everything and only having a few brief periods here and there when symptoms were more manageable it was finally decided by him he needed the surgery.

It will be 2 years in Dec. and he has been most fortunate in that the adjustment has gone really well and he has not had any real difficulties. Of course no one knows what the outcome will be with any surgery but get the best DR you can to increase the odds in your favor cannot be stressed enough I think.

Best of luck...sorry you are at this point and not achieving that remission so many try for and can't seem to achieve.

(I will say after a few months of recuperation, we both got our lives back and are really enjoying life once again.)
Posted 9/17/2012 9:54 PM (GMT 0)
     IndianGuy....sorry it came across as being sarcastic,....it must be my Jerseyness coming through.  I meant it as a ?  Meaning...anything IS worth a shot...Correct?   I agree with you 110%.  Hey, I gave tons of meds a shot, but they all failed.
Posted 9/19/2012 9:53 AM (GMT 0)
Spoke to my GI who stated probiotics such as vsl3 would be harmful given my current condition. Should I just ignore this and try them anyway?
Posted 9/19/2012 11:43 AM (GMT 0)
I'm not a doctor so I would say listen to your doctor. That's why they get paid the big bucks. Not sure why it would be harmful to your condition but you should listen to him/her in my opinion.
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