What should I do?
Double Balloon Endoscopy? - 0.0% - 0 votes
Strictureplasty? - 0.0% - 0 votes
Resection? - 0.0% - 0 votes
Jump off a Bridge.... - 0.0% - 0 votes
Ignore it and hope it gets better on it's own? - 0.0% - 0 votes
Posted 5/20/2011 8:11 AM (GMT -7)
Hello HW Community,
I have had Crohn's for 31 years and probably know more than most doctors about this dreaded disease. I've tried every drug known for treating CD and most of them leaves me sicker than I was before I took the drug Based on many years of GI doctors telling me "I can make you feel better" and them failing miserably, I lost all confidence in their ability to help me.
In 2008 (28 years into CD) I became so ill that I hobbled into the emergency room (unable to stand erect) and was admitted. Prior this time my life was a living hell. I suffered beyond anyone's nightmare and often thought about suicide. My owning saving grace was getting pregnant, for some odd reason, the extra hormones forced my CD into remission. Anyway, I had a re-section that didn't go well, in fact if it is at all possible, I got worse. They couldn't stop the EXCESSIVE diarrhea. I then got c-diff colitis, had a blood transfusion and each test didn't reveal why I was in so much pain. I spent the next six months in the hospital, finally losing any faith I had at all and went to Cedar's Senai in Los Angeles.
Yes this is a great hospital, but as luck would have it, I got a GI that didn't like to return phone calls and was in NO hurry to help me. I was having diarrhea up to 80 times a day and my hemi's were more painful at times than the CD itself. After MUCH pushing and driving the nurse out of her mind, I was finally referred to my first colorectal surgeon (btw my first surgeon was a general surgeon who had NO business performing this surgery on me.) He prescribed a capsule endoscopy and I told him "that will get stuck" and he smiled saying "that's the idea."
To make a long and miserable story short it DID get stuck. The problem was getting their doctor to read my results. It took 3 weeks and after the capsule had caused an even bigger obstruction, I was finally operated on again (strictureplasty) and then developed an infection from the surgery.
It took me almost 2 years to recover from the malnutrition, and all the fun I had in the hospital. I've been on 6MP, eating better, exercising, and started having an "okay" existence when I started to get sick again. This time I lined up a colorectal surgeon and changed to one of the best GI's in the country. I got my results on Wednesday (5/18/11) I have two strictures To add to this nightmare, my girlfriend Trish who also has Crohn's disease had gone in for a resection 2009, and had developed hernias. She started flaring again and wanted to go on the biologics (Remicade) but was told by her doctor to get the hernias repaired first. She went in May 2010 and was sent home with mesh inside her. Two weeks later, she got so ill she was rushed to the hospital and remained in a coma until she died in Feb. 2011 She was only 53, was doing very well and had just gotten engaged. Turns out the surgeon had forgotten to send her home with antibiotics. So of course that is on my mind and the fact that I have many friends who suffer from this disease and are in and out of the hospital and miserable.
So I come to you with a dilemma, my GI wants to do a double balloon endoscopy. He says he can get in there and take a balloon and open up my strictures. I see so many things wrong with this on so many levels. One is that after my resection, I had 4 doctors (2 colorectal surgeons and 2 GI's) give me colonoscopies and COULDN'T get into the small bowel at all. There is such a sharp turn it is impossible to get a scope through it. How in the world can the GI get in there? Secondly, this is area that has years of disease, scaring, etc. I'm afraid of perforation and bleeding out. I have extremely LOW blood pressure to begin with and thirdly, the GI told me it might take 3 tries Unfortunately, colonoscopies make me ill. Whenever I prep, and do the procedure, I spend the next 3-4 months in agony. I'm in hell here. Should I just go in for a strictureplasty and hope they can go in laparoscopically?
So I would appreciate any advice and for you to participate in my poll. I'm scared and don't want to suffer anymore than I have already. Thank you so much for any help you can give me.
Posted 5/20/2011 10:37 AM (GMT -7)
Hey Sherriebaby and welcome to Healingwell. I too have had Crohns for almost 36 yrs. We have a few others members that have had CD that long too.
My colon on the left side is adherred to my body cavity and that can't get around the turn for fear of perforating me. But, my GI keeps asking me to do a colonoscopy which I too refuse, because nothing has happened to get my colon free in that area. I tell you this because I understand where you are coming from.
The prep makes me sick too, but only for 3-4 days not months. I think it might be in your best interest to go back in there and talk to them again and bring all your fears to their attention. Discuss your fears about the multiple preps as well as the fear of perforation. If you have had full open incisions in your other resections, more than likely a lap surgery will not be possible because of adhesions from prior surgeries.
Good luck on whatever you decide. And welcome to the forum. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!