Update following consult at Cleveland Clinic

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run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 3/2/2011 9:24 PM (GMT -6)   
Well, today was a lot to digest! I had my consult this afternoon with Dr. Lavery. There was also a doctor who "works for him" in attendance and an additional doctor who was visiting from San Diego apparently learning stuff from them and checking out the facility. I was greeted with a surprise "peek at the bottom" which I wasn't expecting. He did a digital exam and then put some sort of scope in there so they could evaluate things. Turns out after three weeks of Prednisone @ 40 mg and 1 week of Rowasa enemas I still have a decent amount of inflammation going and contact bleeding that they were able to observe. Not very encouraging.

Dr. L did think surgery would be a good course of action for me if I don't want to try the biologics, etc. We had a good discussion about my rationale behind that and he seemed satisfied that I've adequately thought it through. What I wasn't prepared for was hearing that he would only consider j-pouch for me as a three step process. Once he went into his reasoning though, I felt comfortable with why and I understand it. There are two concerns: first is my use of Prednisone and worry about organ softness, etc. The second is my current weight. I had a baby in August and have been going to Weight Watchers since then and having great success (I've lost 50 pounds) but I still need to lose another 40-50 pounds to be at an ideal or healthy weight for my height. He said he would not be comfortable constructing the pouch while I am carrying this much excess weight. That seems reasonable.

So what he is suggesting is to remove the colon and have the ileo for six months or so (or longer if I want to) to let my body recover from steroid use and also let me get to my goal weight. Then do the step 2 for construction, heal up from that, and then step 3 for takedown. I asked about my thoughts on waiting until October (which should give me enough time to resolve the weight issue) but given the current state of things that would likely mean 7 more months of steroids which isn't going to resolve that concern and is only going to be harder on my body. So, either way I'm looking at 3 steps unless I just want to go straight to a permanent ostomy. I'm really wanting to give the pouch a shot though.

I have a lot to wrap my head around at this point. I'm 2/3 of the way into training for a half marathon that I want to run in mid-May. I really would like to see that through. I feel like psychologically I need it. I think I would be ok at that point getting the first step done. I would think if I do that in mid-May, then I should be fine to go on our beach vacation over the 4th of July....what do you guys think? Tacking 6'ish months onto that would also put me back at the timeline I was originally thinking of for fall and I could do step 2 then. The major wrinkle is with my youngest son who is 6 months right now and nursing. He'll be 9 months then and I had hoped to nurse him until 1 year old, but I don't think I can manage that post-surgery with the recovery, too. It just seems like too much. I know it wouldn't be the end of the world to switch him to formula for those last few months, but there is an emotional acceptance thing there that needs to happen on my part. My husband and I are in the process of discussing and trying to see what we're comfortable with. This is really difficult. In addition, it looks like a minimum of 9 months (maybe more?) with the ostomy which is more than I was mentally prepared for. I have a feeling though that once you make the initial adjustment to it, it's really not a big deal if it's 3 months or 6 or 9.

So I'm open to hearing thoughts and impressions around this. I'm sure I'll have more "thinking out loud" to do in the coming days. Thanks for reading this. I know it's a lot.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 3/2/2011 9:47 PM (GMT -6)   
Goodluck with your decision. it sounds like you're very well informed and preparing well for this surgery. I understand wanting to wait but it sounds like you're not making progress by waiting. Being on prednisone is difficult, especially if you're trying to lose weight. I bet if you have the surgery you will end up losing the weight a lot faster. You will also be healthy quickly after surgery. Goodluck on the marathon, that's a big achievement :)
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa | Currently: stable - Asacol (3200mg) + Canasa (nightly) + 6mp + Allopurinol + Prednisone + Ponstel + Klonopin + Ambien

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 3/2/2011 10:57 PM (GMT -6)   
Wow, sounds like you had a very in depth consultation. Everyone heals differently, but I would think you would be fine for your vacation with the timeline you spoke of. I am sure the sooner you can get off the Prednisone the better...nasty stuff. Also sounds like overall you are relatively healthy right now and that is the best time to have a surgery. Good luck with your decision.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/3/2011 7:44 AM (GMT -6)   
      Sounds like a great consult.  At my initial consult, my surgeon flat out refused to  do a j-pouch on me.  I was 63 at the time and had been prednisone dependent for two years prior.  So, I had this choice....total colectomy with end ileo...or...suffer with UP for the rest of my life.  Prednisone was slowly killing me.  I already had osteoporosis, my blood pressure was high even on three different BP meds and my blood glucose was wacky and I was on oral meds for that in addition to Colazal, rectal meds, prednisone and Humira.  It took me all of three seconds to make my decision....out with the rectum and colon....wearing a "bag" for the rest of my life was no big deal.  Best decision I ever made.
     The only med I take is 1 pill (25 mgm of Toprol xl) for my blood pressure.  I have a new lease on life.  I can do things and go places ...no hauling the port a pots around. yeah

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/3/2011 9:24 AM (GMT -6)   
Dr. Lavery's plan is conservative and the optimal one in your situation. Yes, long term steroid use couple with obesity are two great reasons for a 3-step. I think the thing to focus on is not the number of surgeries but how well you are going to feel once you get that nasty colon and rectum removed. It will be worth it. I can't relate to the breastfeeding issue, no kids here, but do know that Dr. Lavery is one of the best surgeons and his advice is very sound.

Sue

Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 3/3/2011 10:37 AM (GMT -6)   

Run4pancakes, I just had my final takedown surgery in mid-December with Dr. Lavery. I had three steps, too. I had originally hoped for two but he recommended three steps due to my prednisone and Remicade usage. I have no doubt that you could find a surgeon who would be willing to do it in two steps. However, Dr. Lavery knows his stuff and he knows what will give you the best outcome in the end. There are some surgeons who will give patients what they want instead of what they need. He definitely listens to you but he's going to make a recommendation based on his decades of experience. I had so many nurses and techs tells me that they would have him do their surgery or their parent's surgery if they ever needed something like that done. He does not cut any corners and he does things right the first time. Personally, I was OK with having three surgeries if it meant it would lessen the chances for complications in the future. I saw Dr. Lavery for a consult and was able to get in a week and a half later for my first surgery. It was nice I didn't have to think about it too long. I really like his nurse, Marlene, too.

As for the scheduling, I would definitely wait until after your half-marathon. Is it the Indy 500 mini? That's a big deal and I'm so impressed that you could run that especially if you are a little overweight. When I run, even five pounds can make it more challenging. I had my first surgery over spring break last year on April 1, waited until after summer was over for surgery #2 and squeezed in the third before Christmas. It is nice if you can get in all three in the same year because you'll probably hit your maximum out-of-pocket after the first surgery. For me it was daunting to think about three surgeries because we have no family around us and we have three kids - 10,8 and 4 - and I wasn't how that would all work out but if you take it one at a time it's doable. I had my ostomy for 9 1/2 months but the time goes by so fast. It took me a few weeks after the first surgery to feel really good and get the whole appliance thing down but then I was good to go. You'll definitely be able to vacation in July. As for the nursing, that 's a decision you'll have to make. I was in the hospital six days for surgery #1, five or six for #2 and three for the final surgery. Good luck.


run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/3/2011 11:02 AM (GMT -6)   
Thank you, Scrap Girl! I actually felt very comfortable with the things he was telling me and how he explained things. It wasn't maybe what I wanted to hear but it was honest which is what I needed to hear. His insistence upon three steps is actually very comforting to me because I feel like he's going to ensure I do what I need to in order to have the best outcome which is the most important thing. For me personally, three steps doesn't feel like that big of a deal. It's more thinking about how my husband and other support people will deal with things. There comes a certain point though where I have to just say that we're doing it and hope they get on board. I'm trying to gently lead them there. I did tell my husband this morning that I want to do the first step in May and if he needs me to wait longer than 6 months or whatever (a couple of years for the kids to be older, etc.) for steps 2 and 3 then I can live with that. I would rather have a couple of healthy years with the ileo than keep dragging along like this.

The half marathon I am doing is a trail half marathon in Northern Georgia. I did it once before in 2009 and I'm really excited to go back. It's very challenging, but I like a good challenge. :-)

Thanks to everyone for the feedback and advice so far. I am leaning toward May for the ileo as soon as I can get my husband to agree to it. He's not dead set against it, I think it's just not what he expected and he was a little shocked at the idea of it all happening so fast. He did send me a nice text from the office this morning telling me that he just wants me to be well, so I think he'll be fine. As for the baby...9 months of nursing is a wonderful start. I feel satisfied that getting myself healthy will be the best thing as far as allowing me to take good care of my boys for the long haul which is what they really need from me. Missing those last three months of nursing will be more than made up for in mommy being able to be active and play and take them places without being sick and spending so much time in the bathroom. That's the big picture. I plan to set up an appointment with my GI in the coming weeks so we can talk about the best way to get me through until May and then I'll go from there.

Somehow all of this is already feeling like a huge weight has been lifted from me. I can't imagine how good it will feel to wake up without this diseased organ in my body!
UC dx 2/08
Former treatment:

Asacol, Rowasa, Prednisone, Canasa, Cortenema

Current treatment:

Lialda (4 pills 1xday), Prednisone, Rowasa nightly, B-12 Supplement

Unable to stay off Prednisone for more than 4-6 weeks without flare up. Looking at other options.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/3/2011 2:12 PM (GMT -6)   
Well cripes! I was feeling all weak and floaty so I figured I best check my blood sugar (I have a monitor and strips left from pregnancy as I had gestational diabetes) and it was 201 an hour and a half after eating. :-( Between that and the high blood pressure reading I had in the doctor's yesterday I'm beginning to freak out. The darn steroids are killing me. :-(
UC dx 2/08
Former treatment:

Asacol, Rowasa, Prednisone, Canasa, Cortenema

Current treatment:

Lialda (4 pills 1xday), Prednisone, Rowasa nightly, B-12 Supplement

Unable to stay off Prednisone for more than 4-6 weeks without flare up. Looking at other options.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/3/2011 3:14 PM (GMT -6)   
Another excellent reason to opt for surgery!

Sue

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 3/3/2011 3:56 PM (GMT -6)   
It sounds like you had a great consult. Luckily I was off prednisone for several months before surgery so I could do it in two steps. They told me they would have done it in three if I was still on prednisone. I know you will lose the weight when you are off that stuff. Since I have been off prednisone I have lost 28 pounds. Since surgery I have lost 18 pounds (in 7 weeks). I tried so hard to lose the weight and now I'm not even trying and I'm losing the weight.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/4/2011 8:34 AM (GMT -6)   
I'm really not too worried about the weight loss part of it. I joined Weight Watchers 6 months ago and I've managed to lose 50 pounds even while being on Prednisone for most of that time. If I can do that, then I know I can take off the remaining weight once I recover from surgery, etc.

Disney: It seems like you are doing really well! I'm sure you are looking forward to the step 2 and getting on with your life! :-)
UC dx 2/08
Former treatment:

Asacol, Rowasa, Prednisone, Canasa, Cortenema

Current treatment:

Lialda (4 pills 1xday), Prednisone, Rowasa nightly, B-12 Supplement

Unable to stay off Prednisone for more than 4-6 weeks without flare up. Looking at other options.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 3/4/2011 4:55 PM (GMT -6)   
So, you decided to move it up? I don't think you'll regret it. I waited (for insurance purposes) for 2 months after my consult and it was so awful waiting. I just wanted to get it over with.

Yes, I am doing really well. I have been subbing a few times a week and am doing well. I subbed in the kindergarten classroom and had a lot of fun. It was a rough few weeks at first, but very worth it.

Are you going to have help with your baby? You won't be able to lift anything more than 10 pounds for a while. I shoveled snow without my husband knowing and I regretted it. Take care of yourself and if people offer to help out, take them up on it.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/5/2011 12:58 PM (GMT -6)   
     Have you ever had a bone scan?  Thanks to prednisone, my last bone scan was -3.5.  The only option I have is Reclast because my upper digestive tract cannot tolerate Fosamax, Actonel or Boniva.  Well, I read all the horror reports on Reclast and since I have a permanent ileo, I think I will just take my chance on sticking with the 1200 mgm of calcium with D.  Thanks to my former GI doctor, who felt that I should continue with meds for UP the rest of my life, when I first started prednisone in 98 never told me to take calcium with it.  So, for the first six years or so on and off prednisone, it just ate away at my bones.
     Like you, my blood glucose 2 hr pp was always close to 300 while on prednisone.  I had to take oral medication to lower it.  Blood pressure was constantly 200/100 and sometimes higher.  Really, it's a miracle I'm still around.  Surgery really saved my life.
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