I agree - it sounds like he was pretty up front with you. And at least you wouldn't be dealing with your former surgeon. However, that said, you said flags were raised at some point. You should make sure that you feel totally comfortable with him if you do have surgery.

If this were me I would opt for surgery. Now this is coming from a person who's obsessively allergic to hospitals, doctors, smell of hospitals, smell of doctors.... But if you have the surgery AND have them exploring for sources of the pain, it seems like you might get some answers sooner rather than later. I know a couple of people who've gone to Cleveland after years of pain and once they got a look around inside actually did find the cause. Also, an ostomy seems to work very well with baby-making. You could ask to have an end ileo. Is there any reason that an end is contraindicated (Jan)?

Maybe you could also continue dialogue with Dr. Vogel which may help you with some of the less positive aspects of your relationship.

Good luck Erin!

kathy

As Jason said, you can have and END ileo with the pouch in...so if you go this route, ask for an end ileo - they are so much easier. This is what I had when my pouch was still in and then when the pouch came out they didn't have to redo the ileo.

Jill.. never thought about that.. that if they had to remove the end is already there... good point thats just my side note

The only reason to go with a loop over end ileostomy is that it is an easier surgery and probably simpler to reverse.

Jan

Thank you guys for everything! I have not answered Dr. Vogel back yet as I'm trying to weigh things and make sure I feel we can still have a good doctor/patient relationship with what has transpired. I'm still nervous that I've screwed things up. See, I have a HUGE problem standing up for myself and when I do speak my mind I then tend to second guess (and third and fourth) and then regret what I've said.

Now I'm convinced I came across too harshly with him and it will jeapordize the relationshipe and make me feel uncomfortable, always wondering if he hates me. Is that stupid and childish, or what?!! I just can't help it, it's me and my insecure nature.

I discussed it with my husband to see how he felt and he just wants me to do what makes me comfortable. Of course, my pain has been better in the last couple of days and, just like with UC and considering the original surgery, it makes you wonder if surgery is the right decision. I know it's been two years of pain and, even if I feel better today, I'll feel worse soon enough and will want something done NOW! Don't get me wrong, the pain is still there, just duller at the moment.

Do you think I've "broken" this relationship with the doc? Would you feel comfortable remaining with him? Making the final step to say yes to surgery is so scary. I just hope I'm making the right one, but I know that I cannot continue to live as I have been.

Thanks again for listening!!
(Sorry, I think I was rambling)

Erin

Doctors are human just like us. They also know that we can tend to react before thinking things through. If you feel you offended him, just send him a response that reflects that. You don't have to fall on your sword, but maybe say something like, "I hope that I did not step on your toes in expressing my frustration and I am sorry if I came across a bit strong. I would like to start fresh if we can." I am sure that he will be very forgiving, if there is even any forgiving to be done. That will clear the air I would think. Then begin with some dialog about what your goals are and how you would like to proceed.

Jan

OK, so I emailed back Dr. Vogel and first explained my frustration and said that I hope I hadn't offended him.

I then clearly stated my goals, i.e.:
- hopefully have another child (asked about the possibility of an end ileo for this reason)
- that I want to make sure that the area of pain is investigated for a physical cause during the surgery.
- asked if I would be able to get off of the Flagyl

I explained that I'm willing to pursue pain management (I assume I can do that locally?) but that I'm ready to move forward with planning the surgery.

BOY, am I NERVOUS!! Even though I've been wanting it, now I'm terrified of making the decision to move forward! I just happened upon an ostomy site where everyone was telling their horror stories of leaking or exploding bags in embarassing public situations and it really made me second-guess things.

As I mentioned before, I'm also feeling better recently (a couple of days) and even though the pain is still there, it still messes with your mind. I just hope they can find something in there and I'm absolutely petrified that they won't and I'll still have no reason.

ARGH!!! Frustrating! At least if I knew what it was I could have some reassurance that this surgery would fix it but that's not possible since nothing shows up anywhere. Guess I'll just have to wait and see.

Thanks you guys SOOOOOOOO much!!!

Erin

Well I want to counter the bad stories LOL! For all the bag exploding and all the leaks and so on. When I had my loop a year ago it was simple and no issue. Never a explosion ( I dropped the bag one time empting it but that was my fault - and only did it once lol).. and once I discovered what worked for me never a leak. I now have my end illeo - 100% easier to deal with ... no issues and so simple And mine is even on my left side LOL! So, I know when I made my decision to go to an end I was scared (not the word I am looking for) But felt that the world and the pressure was lifted off me and now 1 month later I am loving life and the first tmes in years I see an end to this and my life comin back 100%.

I absolutely second Jason's comments. I had my pouch removed and an end ileo done in January this year, and I can't say enough about how much I love it. So much easier to deal with, very few bag issues. Minor leaks once or twice, but nothing explosive. So much of how it goes can come from a good attitude. When you feel better, without pain, leakage, bleeding, etc., the ostomy seems like the most wonderful in life!
I understand it's a hard decision; I didn't take it lightly, for sure. But Jason and JillM have great attitudes and have had good success.
I am so happy with my ostomy.
I hope you can find some peace through this whole maze of frustration.

Everyone is different in terms of what threshold they have for issues and what quality of life means to them.

For me, long term antibiotic treatment for okay results (which means I still had pain and cramping, couldn't eat what I wanted when I wanted, never slept through the night) was not acceptable. I chose the ileostomy and have never once regretted it.

My ostomy allows me to live my life on my own terms. I certainly could never have had my son with my j-pouch situation and nothing in this world is more precious to me than my darling boy. I'm even planning and hoping for a second child, which seems so amazing since three years ago we didn't think we could have one.

In my heart I just knew pouch removal was the right answer for me and in the end, the gamble worked for me. I think you'll know if you are ready to do this. It will just feel right. Maybe Jason, DMC and grateful can chime in on this, but I know in my case, I was willing to accept the possible complications for the chance of improvement.

OMG JILLM, its the best decision I ever made. I was telling my wife yesterday that it is amazing what a month can do fo me mentally and physically. No more meds, no more living on the crapper, no more worring about what if i eat this, sleeping through the night, able to be a hubby again (yes thats a nice way of saying - well you know). This is the first time in over 1 1/2 years that I feel like I am a person in control of my life. I love the end illeo and i sit here and almost really get choked up that I have my life back. I am not one to show emotions; however, knowing that life is here again makes me sit back, tear up and thank god i found an sanswer... So the end illeo is a blessing to me! How is that JillM