so confused. to reverse or revise or stay?

  I am 4 years out now and for awhile my surgery worked great, but as life went on, it got worse. I always called the surgery my life saver, thought it was what helped me from getting diabetes and high blood pressure and high cholesterol, all that stuff they tell you. Well, I never got any of those, but I still can't sleep, I am still tired all the time, i have horrible diarrhea all the dang time and I can't enjoy a meal with family without getting up and going to the bathroom a few times. Forget going anywhere, I go to the fair and I can't eat the food so I am miserable and if I do eat something I am in the bathroom all night and can't enjoy the rides I lost all this weight to go on. Yes, I am thankful for losing the weight, I tried many times to lose it the good old fashioned way with no avail, but I often wonder if my life would have just been better without having this. At least I'd be able to eat and not get up and have my horribly smelly (and embarassing) diarrhea. I am extremely pale and I never got my hair back so I truely look like a cancer patient and I frequently get asked if I am. It's embarassing. I look bloated a lot, mainly probably because my gas is so smelly I don't want to pass any, plus the worry it might really just be dumping or something will leak out, which I have often. I am always hungry still too. I also crave foods of course I am not supposed to have. I just feel sometimes like my doctor gave me this story of a perfect life and I never got any of it. I know I have to work at it, but for some reason it's not working as well as everyone else. I am thinking about a revision because I don't want to go back to before I had the surgery, I can't gain all that weight back because that would make me more unhappy. I wonder if the DS might be a better option, but then I look into it and I will still dump and I know that is a lot of my problem. I do not want to cook for my family and then make something different for me because they want "normal" (has fat, calories and carbs) food and I am stuck eating lunch meat and some cheese or peanut butter or something while they are having mac n cheese. I get asked a lot from my bf why I did this and looking back all I can say is because nothing else worked, but look at me now. I am skinny and my insides don't work right and I think he is worried about that too. Wants to make sure if we have kids they will be ok since I am not and make sure I am not going to get really sick and die early. I've already had a PICC line and blood transfusion. Been hospitalized for lack of protein. Now that I moved I can't go to my surgeon, not that I want to, so now what do I do? I heard most surgeons won't usually see another surgeon's patient. I am scared now. I am worried I am going to be like this forever. I just want to be able to eat with my family, play games with them, go to the movies, watch a movie at home, go to an amusement park and not have to go to the bathroom literally every 5 - 10 minutes. Going around 10 times a day is just not normal, then when they smell and make the house smelly, it's even worse. I'm just wondering what my options are, what can I do? I'm only 28, I don't want to live like this forever, I want a normal life.

Becky,

All you're dealing with sounds terrible, you should be getting some serious help from your surgeon. You could have a bacterial over growth or some other problems in your GI tract.

What kind of surgery did you have and who is your surgeon?

Kerry 

 I had Distal Gastric Bypass (RNY) and my surgeon was Dr. Ki Oh. I have found a couple doctors sort of close, but not close enough to go and have them tell me they won't take me because I had my surgery from another doc, and I can't fly to see mine either. I feel stuck. Could something like a probiotic help the bacterial over growth?

Becky,

Why isn't your surgeon helping you? He should be able to consult with your PCP or another surgeon who is closer to you and help you get this solved.


Don't you have a PCP; family doctor? He should be able to help you get in touch with a surgeon or specialist who could help you. All doctors take an oath to help anyone who needs it; if a surgeon refuses to help you he could be disbarred. It's totally unacceptable for any medical doctor to refuse to treat you. 

As for a probiotic; it may help and if you're not taking one I would get a bottle of "Garden of Life; Primal Defense Ultra" and start taking it ASAP. I get mine from The Vitamin Shoppe on the Internet.

www.vitaminshoppe.com/store/en/browse/sku_detail.jsp

There are also more powerful things that you can take; like Flagyl:

www.medicinenet.com/metronidazole/article.htm 

But I think Flaygl is prescription only.

The main thing is that you have to take charge of this problem and get it resolved; what ever you have to do, do it. This could get very serious, so don't mess around; you may have to get "large and in charge" about it, but you have to do it.

Kerry

Hi Becky,

I have gone and am going thru exactly what you have been going thru. The diarreah, low protein, low iron, iron infusions, hair falling out, I also have been on tpn which is an Iv for 12hours a day.
I also have the distal rny.
My surgeon is working with my primary care physician. I wen t on flagyl for two weeks for bacteria overgrowth. I then went on a probiotic. Primal Defense Ultra. (be sure to get the ultra). I took it 3 to 4 times a day. That was recommended by my surgeon. That helped diarreah alot. I was going 15 to 20 times a day!! I am now down to about 5 x aday and soft poo. Your hair is falling out probably because of low iron stores. (ferritin) Mine number was 25 the very low end of normal. That is too low for me. the range is 20-200, I went to see a hemotologist. They gave me three iron infusions. My hair is  starting to come back. For hair to stop falling out your numbers have to be around forty and  seventy for regrowth. It takes time.  You have low iron because of the diarreah. You need to see someone. My surgeon is 10 hours away and I work with him thru the phone. He suggested the hematologist also. My body does not absorb the protein and I am going to have my common channel lengthend. Right now it is a 100cm. I think the surgeon is going to lengthen it to 150cm for better absorption of all vitamins and food. I should be able to keep my weight off too. My insurance is going to cover it because its called malabsorption and it needs to be fixed or more problems will arise!! please call me and I can talk with you more.  I will send you my phone number in your message box. Take care it will get better if you know what to do....CALL ME

LORI

 what iron supplements are you on now? i am wondering if there is something i can do kind of in the mean time until i can get to some doctor that can help me. i am going to get the primal defense ultra and hopefully either get in to see my doc or have him write me a scrip for the flagyl. 

Hi Becky,

I hope things are starting to turn your way now that you have a little help and support.

In reading Lori's post, I agree with what she's saying about Iron. And as an aside; many people get constipated when they take Iron, so you may want to get some cheap Iron Sulfate and start taking it right away just because it may put a halt or at least slow down the diarrhea a bit.

I also could not agree more about getting in touch with Michelle (aka Vitalady) she's awesome and will he a huge resource and help to you long term in getting your vitamin & mineral levels where they should be for good health.

You're not alone, there are lots of people who are working on and dealing with these problems and a very good chance they can help you get on top of your problems too.

Kerry

I am taking a liquid iron. That will absorb the best. I am also trying to keep the iron stores up so my hair continues to come back. Your hair loss is called telogen effluvium. Look it up on the internet. It has lots of answers for you. If your diarreah stops and your labs get better and they will, your hair WILL COME BACK. Believe me, I was a basket case over that. I'm still losing it but   its starting to slow down and that means my new hair is coming in. I'm going to see the hematologist next week to see what my numbers are. If they are not High enough for me I'm going to get another Iron infusion.  I think Dr. Keshishiana is from California and he does revisions. He probably could help you. I know I asked him for advice a few times. He comes on this sight once in a while. Can't wait to talk with you on the phone!
Lori

OK, I have some info for you as well..... Have you tried to contact Michelle?  (Vitalady)????

She is a WEALTH of information & is just an AWSOME, AWSOME lady.

She had her Distal RNY surgery with Dr. Ross Fox, but she knows Dr. Oh & Dr. Shrikanth as well.

Also, she will be able to answer LOTS of your questions & hopefully, be able to help you get on track, emotionally.  Here is the link to her profile... you can send her a personal message (PM)
http://www.obesityhelp.com/member/vitalady/

And, here is a link to her Vitalady website
http://www.vitalady.com/



I encourage you to contact her!!!!
-Jamie

 Thank you so much everyone it is comforting to know I am not alone, that I am not the only one this has happened to. I am going to get some Primal Defense Ultra as soon as I can get the funds and get to Vitamin Shoppe. That seems to be the best price out there. I am trying to work with my physician and his nurse practitioner but when I ask questions I get the "I'll look into it and call you" and never get a call. My doctor tries passing me off on to specialists whenever I complain about anything at all. It seems like he is afraid he will not have the answer so he sends me to someone else. It's rather annoying. My surgeon is in WA and I am in CA, I had mentioned how I was feeling early on and he said drink more protein. That's it. Because of course it couldn't be anything else. Now I am worried I am going to have a hard time finding a surgeon to do a revision or even look at me because I am another surgeon's patient. I did not know it would be that hard. I did not know any of this was going to be this hard! Again though, thanks to everyone *****plied so far, it is actually encouraging to know there is hope. Lori I will call you, thanks for letting me know there is also support.