For those of you who've been following my story (see post Nervous about Cleveland Clinic..), first, THANK YOU!. I'm really bummed now and I don't know what my next step is. I got an email from Dr. Vogel saying that my gastrografin (sp?) enema x-ray showed nothing abnormal and "there is no radiologic explanation for the pain I experiened during the scope". He referred me to Dr. Bo Shen who he said is an expert on non-surgical pouch pain treatment. He thought there was a kink in the small bowel leading into the pouch, but it all looks fine. I didn't think that's what it was because it's a constant pressure pain and I have no blockages, etc., but I was willing to give it a shot. But that's not it either.

Does he not get that I've been trying every method of non-surgical treatment they've thrown at me for the last two years?? Can't they acknowledge that there could be something there that doesn't show up on a scan?? I've read so many stories on here about that exact same thing. How do you get them to do something further? I emailed him back and explained just what I said above, that I've tried everything non-surgical for the last two years and I'm at the end of my rope. That I feel there's something there that's not showing up on the scan and that my next step is to look into removing the pouch for a permanent ostomy. I asked him if they would ever do an exploratory scope/surgery before I made that final decision and, if not, then I need to know what to do to move forward with pouch removal. I explained that this is effecting the quality of life for me and my family and I'm not willing to let any of us suffer anymore.

I just hope he answers back with something because I really don't know what else to do right now. I'm so tired of being in pain and having everyone tell me there's nothing there. I wouldn't wish for a perm ostomy and do worry about things long term, but I know that I was ok when I had it and can be again. I just don't want PAIN!!

Thank you for listening.

Erin

Hi Erin, I am so sorry that you have not found any answers. I went through the same thing for almost 2 years. I was lucky enough that my surgeon finally decided to do surgery. For me, it was a good thing, there were things going on that just couldn't be found by diagnostic tests. I had so many tests, along with consultations with various GI's and Dr. Fazio. Hopefully Dr. Vogel will agree to do exploratory surgery, if not, maybe your current surgeon? I feel your frustration and I wish there was an easy answer. Surgeons do not like to do surgery unless they find a reason, but sometimes, they need to go inside to find the reason. I hope it works out for you,

janna

Hello again! Well, Dr. Vogel had emailed back that he would take a look at my previous MRI with the radiologist and get back to me that day. I didn't hear anything for two days so I emailed him back last night and he answered that he had not had a chance to look at it but it was on his list of things to do

I answered back reminding him of some things I thought may be significant in the history of my pain and he answered that he discussed my case with Dr. Bo Shen and his first reaction was that we may need to re-do the pouch. Dr. Vogel said he thinks there's "more work to do" before we get to the point of surgery but he's going to discuss the case with Dr. Fazio and get back to me.

I just don't get why they can't do an exploratory surgery (what's it called, a laparotomy??) to take a look. It feels like there's something in there. Do they really have to re-do the pouch if there's an abcess or something? Why don't they start small and just look first? Or is that not possible? Well, at least he's looking into things and we'll hopefully be moving forward with something. I'm just so tired of being in pain all the time.

Thank you for listening!

Erin

I'm just so MAD!!!!! After all of that, I get an email today from Dr. Vogel saying that he spoke with my original surgeon today (the one who blew me off for two years) and that they've both "reached the same conclusion", that I need to see a pain specialist.

I mean, I'm SO MAD!! Where does he get off calling her to discuss it and then just siding with her?!! Does he not understand that I saw her for two years with NO resolution and that's why I paid out my own pocket to come see him for a second opinion? Am I being unreasonable here?

I mentioned previously (maybe this post, maybe another) that the first thing he said to me when I saw him was that he knew my surgeon and had trained under her at Hopkins. That certainly set off alarm bells but I decided to trust his professionalism. Boy was I wrong! If it had been another surgeon that he didn't know, would he have called them and just agreed that there MUST not be anything wrong with me since Dr. God must have already ruled everything out! Isn't the point of a second opinion to get an unbiased look at the situation?!?! He did a scope and saw that something was abnormal. He said that he was unable to get out of the top of the pouch and he should be able to. Just because the x-ray did't show anything, does that negate what he actually did find? How can he make a decision that I need a pain specialist off of only that test when clearly there was something there? No, instead he calls my original surgeon and decide together that I'm just crazy.


OOOHHHHHHHHHHH, I'm shaking I'm so mad!!

Ok, honestly, am I overreacting? Should I have expected this to happen and I'm just naive? I now feel that I cannot go to Cleveland Clinic because if I request another doctor there I'm just going to look like problem patient who's doctor-hopping. I guess I need to find someone else, although I really had hope that CC was the answer.

I was going to write him an email back and copy Dr. Shen (since he was kind of involved in thing initially) and explain my dissappointment. Obviously I'll be much calmer and reasonable than in this post, but I really want to know how let down I am at his lack of professionalism and I would like one of his superiors to know as well.

I welcome any opinions and/or advice. Sorry this is so long.

Erin

I am sorry about this. I dont know your medical history, but if you feel that something is physically wrong that follow your instincts.

I would call that surgeon back and make sure explains in detail why he came up with that conclusion. An email is not good enough!

Have you considered any other surgeons or GI's in NYC? I am from NY and there are many top Pouch surgeons out there. I am sure than even DC and Philly have some good docs are well (a little closer to Maryland).

I think it is fairly common for doctors to confer when consulting. I don't see this as them ganging up on you to tell you nothing is wrong or that you are crazy, but more that there is nothing these two doctors can do for you. Seeing a pain specialist is not a bad idea. It can get your pain under control so you can function better. It does not mean you have to stop looking for an answer. It could be neuropathic pain that cannot be surgically repaired. It is possible that it is related to a stricture at the top of your pouch and I suggest you address that with Dr. Shen.

I certainly can understand your disappointment, particularly since you had such high hopes for this consult. Definitely wait a day before replying to his email.

Jan

I guess I just don't understand HIPAA rules. If they can't give any information to a spouse how is it possible that they can talk to another doctor without permission? I don't think it's wrong to talk to another doctor, but I think it's just as important for patient privacy to ask before telling. Am I missing something?

Erin, I can totally understand your anger - especially when he's talking with a doctor you have absolutely no faith in. I don't know what the solution is but I do think Cleveland is the best place to get answers. Maybe you can just talk with Dr. Shen instead of them both. I don't think a lot of people understand how fragile we become when we're in constant pain. Isn't pain caused by something? Isn't a pain clinic just masking pain? It's one thing if they know what is causing the pain and there's nothing that can be done for it. But it seems as if a little more delving into your pain should be done before it's time for the pain doctors. Don't give up the battle yet. Keep trying to get someone to help your figure out what is causing the pain.

And take Jan's advice - wait a day before emailing him. (But if you want to write what you're really feeling - that's okay. Just remember to immediately delete it and never ever get your cursor anywhere near the 'send' command.)

kathy

I can certainly understand doctors consulting with each other but when I obviously feel I haven't been listened to for two years and have traveled all the way there for another opinion, how is it right for him to disregard all of that and just take the easy way out by agreeing with her?

So many times on this board I've heard people say that nothing shows up on radiographic exams but something was then found when a surgeon went in. Why is it that I cannot get someone to listen and look for me? For him to do one test and assume that nothing is wrong after speaking with her just seems medically unethical when I've gone to him for an unbiased second opinion.

I honestly do not believe he would have contacted the doctor if I'd come from some other hospital with the same complaints. Because he knows the hospital and the surgeon, he assumes they must be correct and that is 100% wrong in my opinion.

I would love to continue at Cleveland Clinic but if I request another surgeon to consult with, I feel I'll be branded as a "problem patient" who's "doctor hopping" and no one will take me seriously. I guess my only option is to find another doctor.

Thanks for letting me ramble again.

Erin

Erin please talk with Dr. Shen!! I wouldn't feel bad at all in asking for someone else to take the case. You can discuss that with Dr. Shen. IT'S YOUR BODY, YOUR PAIN.. I do agree with the waiting a day or so before firing off an email. I feel so bad for you, but don't give up on the CC. The majority of people find hope there.

nys

You do need to speak to your doctor in a calm manner and try to communicate effectively your concerns. Tell him that you came to see him to try and get an answer to your problems; if you had simply wanted to give up looking and go to a pain specialist, you would have stayed with your other doctor. Ask if there are any other tests/ surgeries they can do or if there is anyone else there that would be willing to look for the problem. Perhaps if you lay it all out for him he might refer you to another doctor that might search a little more.
Just communicate!!!! Don't just stay angry and let this go and try to find someone on your own. Things might be easier if you tell the doctor how you feel.

Just my 2 cents! I have dealt with CC for my issues through my drs and I know others here that had some INTERESTING appoitments there with Dr F and the others. Now dont get me wrong.. They are wonderful there and they are prob the top of the game... BUT THEY DO NOT KNOW EVERYTHING and THEY SOMETIMES MISS THINGS... I wont mention names but there are ppl from this site they sent home after doing some scopes and all the test and said nothing is wrong.. then later on they had MAJOR ISSUES THAT NEEDED TO BE FIXED ASAP! So, dont toss all your eggs in the basket and bet your life on these guys - YOU KNOW YOUR BODY AND IF SOMETHING ISNT RIGHT I BET ITS NOT. Sometimes Drs dont want to explore the unknown.. you know they dont want to tarnish their track record. My 2 cents... Find a new Dr who is good in this field and fix your body... Trust me I have been through it all too and in time they will listen... just find the right one! I really feel for you and really pray all works out.. You so deserve a break!

I cannot agree more. This is not about medical politics and egos (although it often appears to be and can be if we let it). This is about finding the right doctor who will help you find the solution to your problems. I also agree that some doctors do not want to go beyond the standard checklist and cannot seem to think creatively. Rather than trying to force them to do something they do not recommend (you can't anyway) you need to move on.

I do think you can find someone within CC that is willing to take on your challenge, but you are probably right that it is possible that others may not want to take you on if you are perceived as a problem patient or if they think you are too complex. I think the key is to be honest without being accusatory. Be clear on what you are hoping to accomplish. The best doctors in this situation are not necessarily the ones with the greatest track record. Doctors who take on risky patients tend to have higher complication rates, but that does not mean they are less skilled.

Also, do not dismiss pain management because it can help you to be able to function and cope while this is being sorted out. Just do not accept it as the end of the line until you are satisfied that this is chronic pain syndrome without other treatment. Beleive me, chronic pain syndrome that is neurogenic and incurable does happen all the time, but you do need to rule out all treatable causes.

Jan

Well, I sent an email to Dr. Vogel explaining how disappointed I was at the outcome. I explained that I had been frustrated with my original surgeon for two years, feeling like she did not listen and, at times, was offensive to me. That I had come to him for a second opinion and felt that he did not respect that and investigate and formulate his own theory. I also mentioned that I would not feel comfortable returning to her, especially in light of their recent conversation (his previous email stated that she'd be happy to remain my surgeon, or he could be).

He answered back that it is common practice for surgeons to communicate with others who have been involved in the case and that lack of communication is a major reason for wrong decisions. That he respects my original surgeon's "judgement and expertise" and they both want to help me get through this. He's happy to be my doctor and recommends that I start with a pain specialist. If that does not appeal to me or I feel the pain is refractory to medical therapy then he recommends I have a loop ileo at CC and that he will be the surgeon.

I understand his position but I also hope he understands mine. I don't know much about pain management but I assume it's a combination of drugs and other therapies. The problem is that I've been trying to get this problem fixed for two years and my main goal is to try to have another child. If I'm on drug therapy for pain, how does that accomplish my goal? Then my life just continues to be on hold while it may or may not work and even if it does, the drugs can't be good for pregnancy. At this point I feel like a temp ileo is what I want but that asking for that must seem crazy. I also want to make sure that, if I do go with the temp, that they'll actually go in and look in the area of my pain to rule out an actual physical cause. If they just do the ileo and don't at least look to see if there's something to correct, then I could still be in pain.

Is it strange or masochistic to request this? Also, if it was you, would you feel comfortable with this surgeon now given the recent communications and possible hard feelings? He didn't recommend anyone else and specifically said that he would do the surgery.

On that note, has anyone had a pregnancy with a loop ileo? I know I heard from people who had end ileos but by nature they behave better and I'm wondering if the structure of the loop would make things much more problematic during a pregnancy.

THANK YOU!
Erin

I dont know about having a baby LOL..But, dont forget you can have an End Illeo (much easier to care for and deal with plus almost no mucus discharge - with me its only about dime size once a week and no pressure or anything - but thats me) and you can always go back to your pouch even with an end... Much easier to deal with and care for ... No where near a loop and the issues that come from it. Good luck and seems that he is answering your emails and maybe starting to hear you. Just remember every operation makes it sometimes harder to heal and so on. My end was suspose to take 45 min to 1 hour and ended up 5 + hours with a lot of issues.. that being said I LOVE IT AND STARTING TO FEEL GREAT!

Sounds like he was quite candid with you and is trying to be understanding of your issues.

I still would go forward with pain management as a first step. You don't know what it will involve until you have that first consult. Perhaps you will be offered a nerve block to locate the origin of the pain. Oral narcotics are common. However, do not assume that this would preclude pregnancy. Opiates are actually pretty safe during pregnancy and the baby may have to taper off afterwards. But, bottom line, do not toss out something that can be a great help to you before investigating it.

If you want exploratory surgery at the time of ileostomy you have to make sure that is in the surgical plan. Otherwise, you cannot assume that they will explore. A loop is more problematic during late pregnancy in particular, but very doable. It sounds like you have opened a good dialog and it sounds like this guy is willing to work with you.

Jan