Desperate for Help with Ileo Obstructions - Need Advice on Cellvizio Procedure

I read an article in Women's Healthsource magazine someone gave me. Has anyone ever heard of Cellvizio? It is the smallest diagnostic microscope flexible for gastro and biliary problems. They can pinpoint tissues that these conventional tools can't with minimal surgery. I found a doctor in PA that does this in Lankenau Medical Center outside of Philly. I made an appointment as they said they may be able to help me. There are only 20 hospitals in the US that have this procedure. If I don't do something soon, I think I will die as they said in my local hospitals that they can do no more for me. I cannot eat anything solid anymore. I get at least 2 blockages a week now, so painful with vomiting. I have been in the hospital 2 times this month. The second time I went in, they let me lay there for 12 hours in pain. When it finally opened up, they sent me home in scrubs in 30-degree weather with medical transport because my clothes were soiled. I live alone. They didn't even give me fluids nor did they call my primary. Basically, they said I am done. I cannot have any kind of solid food at all now. It just gets worse and worse. This last blockage happened on 2 spoonfuls of mashed potatoes. I just eat ice pops, broth, fluids, water, some yogurt. I might as well die if I have to go to baby food, but I will probably block with that as it is not liquid. I can no longer live with these 12-hour vomiting painful blockages alone. I am so weak sometimes I can hardly stand up. Going downhill real quick. I have a consult with this doctor in PA in Feb. That is the soonest I can get in if I make it till then. Anyone else have these problems? I thought as time went on this would improve. It is almost 1 year, and I am getting worse. The medical profession gives me no hope at all. When I asked how long I had to live like this, they were very quiet with no answer, so I guess it won't be too long. I have already started to give my things to who I want to have them, and I am selling my furniture so it is less on my kids. For me, this improvement operation became my final death sentence. If anyone has heard of this procedure or anything, please let me know. I am getting near the end of the line and need some answers soon. I am so skinny and malnourished. I am still going back and forth between bags as it is all liquid, and I cannot find one decent one to hold it. I hate to sound so awful, but I don't really care anymore. I have 0 of a life. I try to keep to myself because the real people that have lives don't want to hear this all the time, so I am always alone. Me, my dog, and cat. I live now only for them. So tired of trying but still going. It's not over till it's over. Help anyone. Judy.

Sorry you're suffering so much. Unfortunately, I don't know all the foods you have eaten.
I was given a list of foods that caused constipation, blockages, and watery stool.
Mashed potatoes are supposed to constipate you, so I guess it worked. You may need to
look at the food list to see what foods work for you. I have tried everything to cause constipation because mine likes to run all the time. Unfortunately, I have to take morphine just to slow the bag down. I think you should find a new doctor that will help you with this problem, and if it means traveling to another state, so be it. Good luck - don't give up.
You have two animals that not only depend on you, but share their love for you!
Butterfly 48

Bunkie, I don't know how you're able to handle this.  You need some medical help and another pair of hands at home wouldn't hurt.  It seems like you're driving yourself to and from the hospital, getting your own meds, preparing your "meals" and everything else including taking care of the pets.  The medical help you're getting seems questionable and my heart is breaking for you. Please don't give up.  Ask your kids to get you somewhere to be cared for properly.  Ask them to make sure you get the help you need now.  Maybe a neighbor can care for the pets. Maybe it's difficult for you to ask but please, do it for us, your ostomate friends.  We really care about you and want you to get help ASAP.  I'm praying for you and wish you way better than you've gotten.  Keep us posted.  Mike

Bunkie, I had surgery at Lankenau two weeks ago!!!! Are you seeing Dr. Marks!?!? He is the best there is, and the staff is incredible! Please let me know who you are seeing! And there is hope. I remember being so low I didn't think I could move.... Look out the window... Focus on something, a tree, a bird... How did it get there? What does it do all day?
Take vitamins, liquids that give you some kind of nourishment....talk with your primary doctor, see if he can find some kind of services to come into your house...

I am glad to hear someone went to Lankenau. I am seeing a Dr. Bob Etemad. He is with the Main Line Gastroenterology. I am assuming it is a group. This was the first available appointment so I took it and it is not until Feb 14th....VALENTINE'S DAY...Woopie. This is it. I hope they can help. I do have some good friends by me that help occasionally but everyone is limited today and you just don't want to make a pest of yourself. Believe me, people disappear after a while if they haven't been there so I do as much as I can alone. I am getting very tired of this. I hope they can help me. Thank all of you who answered and are concerned. It makes you not feel so alone. I will let you know how I make out.

My Ostomy Journey: LeeAnne | Hollister

How did your appointment go? I saw one of the doctors in that group for a second opinion for a medication they want me to start to keep my Crohn's in remission. Are you doing better? Jean

Hi Jean..I can't seem to get a straight answer from these people..They finally did an ilioscopy on March 8th and it was okay but I am still on liquids and still get blockages..I am losing a lb a week..Then he came up with another plan but never related it to his secretary..Even if he did, she never calls back..Finally, yesterday the 12th she calls me and said she knows nothing about it..Said he is waiting to hear from a radiologist..First he wanted to admit me now the plan changed..I have no nutrition..I can barely urinate because all the fluids I drink go into the bag..I am getting so weak I don't know what to do..Saturday I had another 12hr blockage with vomiting just from a milked down soggy scrambled egg you could drink so now I guess that's out and they know this and I don't even get a call back..I am really getting discouraged..I don't think they know what to do with me and maybe I should disappear..I will give it till Thurs as I need an answer for my primary care in Jersey..I know he will probably want to admit me to the same Hosp. I was in but they don't want to touch me either..This is becoming hopeless..I am tired of calling them and getting no answers..I am too sick to research anymore..Running out of money going back and forth and still I am in the same position..I know if they don't get me soon I will surely die..Did it take you this long? Maybe I should give it a little more time? I don't know what to do anymore..I have utilized my family and friends as they all work and I live alone..My husband is dead 13 yrs now..I guess I will be joining him soon if no one can help me..I lived through breast cancer at 47 and it would be a shame to die of these blockages they can't find. Thanks for your concern..You are making out better with them than I am..Judy

Anyone else have any other ideas? I just don't know what else to do. I am so depressed and angry I don't go out or change my clothes. I am so weak. I will change them when I go to the doctor maybe, or maybe not. What's the point? They probably think I am nuts as I cry all the time and they don't take me seriously. I guess they will find the solution at my autopsy. I am only 110lbs now from 150lbs. Is this really normal? Just drink broth, that's okay, right? Are they all this stupid? I don't get it anymore and am tired of trying. It will take too long again to wait another month for another doctor to review all of this. I probably won't make another month, much less research, as I am getting too tired now after typing this. Judy.

You need to call that doctor's office every couple of hours until you get an answer! If you call after business hours, you will get an answering service and they have to pass it through to a doctor, whatever GI in their office is on call. That doctor may send you to the hospital, and if he does, insist that you are seen by the GI that is on call from their office, not an ER doctor! Drink Ensure or something similar to it to get some nourishment/calories. You have to be your own advocate. Be aggressive, you have been through your share and need to get your life back!!!!

I finally went to my primary care office and he told me to do the same thing. I am going to the ER on Sunday and he said if they give me any trouble then he can intervene. I am now low on urine function because I am so dehydrated. I have to drink at least 3-4 ounces of water every 10 minutes. It's a shame you have to be half dead for them to take you in. Judy

I am so glad to hear from you. I have been so worried. Let me know how it goes, please!

I had the same problems with dehydration. I was drinking 8 liters of water every day and only peeing once a day if I was lucky. I'm sure glad we have a nursing station here in Haines Junction as they had me come in every other day for an IV top-up so I could digest a meal instead of washing it right through. Even then, I started losing weight. It is now 2 months since my reversal and I'm back to my optimum weight of 160 lbs, but it's coming back mostly as fat because I can't do the normal amount of activity I used to yet, but I'm working on it. Don't let depression get its grip on you! Someone else on this site recommended marshmallows for me and did slow down the flow, and I was able to digest more of what I eat instead of dumping it out of the bag. It also helped me retain water more too. It might work or it might not, but the marshmallows will give you more energy at least.

I will definitely let you know how it goes. I am so weak now. I hope they keep me on Sunday as I am 2 hours away. I won't leave. I don't see how they can make me. Thanks for your kind advice everyone. It gives me hope which I was really beginning to lose. Judy.

Hi there, I haven't seen anything from you for a while. How did you make out?? Jean

Hi Jean, thanks for your concern. Well, so much for Lankanau. I had the scope in Feb and they, of course, saw nothing. They sent me home and told me that when I had another attack, I should go to my local ER immediately so they could see it on an X-ray and determine where it is getting caught up. Then, I should call them and go to their ER when I could, and they would admit me. Are all doctors, excuse me, assholes? I totally give up. I did what they said. I went to their ER. They notified the doctor I went to, claimed he never said this. They kept me for 3 days for observation, put together a team, switched some of my meds, came to no resolution, and released me, telling me to go to my local ER again if it happened again and the "team" would have me transferred. Well, 3 days after I was released, I got another blockage. I went to my local ER where my primary care (thank God for him) is. They called Lankanau Hospital and the doctor I was seeing. The response was that they have no records on me and knew nothing about me or the hospital stay. I remained 10 days in my local hospital where they treated me for dehydration and malnutrition, and I was released again. They still did not get any records from Lankanau, like I was nonexistent. I just spent another 5 days in my local ER again with another blockage. These surgeons are afraid to touch me with all the complications, and even their social worker could not get the records from Lankanau. Finally, the doctor I saw there only sent the result of the scope. I guess I was too complicated for them, but they sure as hell billed my insurance company (this invisible team I had). I am back to scratch, sick of this trying to find someone to help, out of money and time. I am exhausted, my family is tired, my friends run. Oh, oh, guess what? I was just interrupted by a phone call. Now, I'm trying to see a surgeon at the University of Penn. Get this, I have to go through the ostomy clinic first to be evaluated before I can even be seen. Imagine, I have 2 insurances and I cannot even get a consult with a surgeon without going through the ostomy clinic. What the hell do they think we are, freaks? I am sick of this. They gave me an appointment for May 8th. I have an appointment with my primary on May 1st, and I also need a letter of okay from him to be seen. I just think they hope you will just croak before you get there. Oh, you can get the lousy ones. They're a dime a dozen, but to get a decent one, this is what you have to go through if you stay sane and live through it until you get there. What a joke. Oh well, I guess I will go if I am still alive because there is nothing else I can do anyway. Our quality of healthcare has gotten so bad, it is a sin. It was never like this years ago. I am glad I am getting older because I don't think I could last more than another 10 years of this crap. I feel sorry for my kid and grandchildren. What is to become of them? I am almost glad I will probably not be around to see it because that alone would kill me. Well, that's it until May if I am still here. I'll let you know. I sure as hell hope no one else ever gets the problems I have with this thing I live with because help is very hard to get. They just don't want to bother or they don't know enough about it. There are millions of people with different types of ostomies. I am sure I am not the only one with complications, but only God can help you if you get them. I sure see this now. I think this is going to be my last shot. I just can't take it anymore. If these people don't give me some hope, I know there is none. I will live a life of isolation and just have to accept it. I am tired. Thanks for listening to me vent, but I am really losing hope and trust in all of this. Judy

Bunkie!!! Please ask for help, you make me teary-eyed every time. I definitely have my bad days where I don't feel like I will make it. I also suffer from obstructions and keep pretty much a liquefied diet. In fear of going yet again through the agony of an obstruction. But I am thankful that I am still able to even consume anything. Solitude in excess is never a good thing and my sweet, sweet dear, you need to get out. Get out of all the negativity. The kids that you have worked so hard to raise need to be there now for you. I understand how you feel, not wanting to bother anyone with your problems. But you are not bothering them. It's their duty to do for you. Please, please get some help with things and definitely find different doctors. You have to want to live, not like this I know, but start letting those around know what's really going on and how you need help. Sometimes you'll be amazed what compassion you can get by just asking. Once you are gone, you can't come back. Please don't give up. Pray, my dear, surround yourself with positive things. You are not alone, just like you express here how you feel...please do this to others who are physically around you. We love you and I am sending my prayers your way. It will get better, just believe!!!

Bunkie, tell us how you are doing please....!!!!