Scheduled to have surgery on Tuesday but scared! Have questions. Help!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/23/2010 1:59 AM (GMT -6)   
Hi Everyone,  I have posted here several times and have talked to a few of you on the phone.  I feel like I need answers right away!  I had a subtotal colectomy with an ileo-rectal anastomosis in April '09.  It helped my problem of severe constipation after eating but now I have had diarrhea for the past year and I have lost 26 pounds, I am very weak and have had all kinds of weird symptoms since the surgery.  The doctors have tried many things to control the diarrhea (Lomotil, Vicodin, diet, etc.).  For a while things were slowing down a bit but I still never felt like eating because I still didn't seem to ever feel any better, any stronger or gain any weight.  In the last couple of months I went from diarrhea 8-12 x's a day to having it sometimes 20x's a day which caused a lot of problems for me.  Anyway just 2 days ago my doctors did a 4th test (gastro-gaffin enema) and finally figured out I have a "blind-loop"  basically a loop of small intestine that is close to the anastamosis site which has really ballooned out and constantly gets infected.  That is part of the reason I often feel too sick to eat and have these weird hot/cold, hot/cold symptoms.  Now they want to remove that section of terminal ileum (the blind loop) and maybe redo the anastamosis from an end-to-side one to the better functioning end-to-end anastamosis.  I had my first surgery done in Northern California; this one would be done by a new surgeon I have been referred to.  His name is Jonathan Worsey, he is at Scripps Hospital in La Jolla; and I know he did some of his training under Dr. Fazio at the Cleveland Clinic.  Does anyone know of him?  Also, I told him I am feeling so weak and tired that I can hardly ever even leave my bed and requested that I be given some sort of IV nutrition before the surgery to "build up my strength and maybe my weight."  He said if I am strong enough to walk into his office, I am strong enough to get thru the surgery!  I think his credentials are good; I read about him on the internet; but now I am scared.  Also, don't doctors always require some blood work to be done prior to surgery?  They are calling me tomorrow to tell me the details of Tuesday's surgery but nothing has been said about any pre-surgery prep!  Doesn't this seem weird?  What do you think I should do?  Thanks for answering.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/23/2010 7:53 AM (GMT -6)   
You're in good hands at Scripps. All my pre-surgery labs, blood, chest xray, EKG, etc. were done the day prior to surgery at the hospital. Your call from the surgeon's office will probably explain that.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/23/2010 1:08 PM (GMT -6)   
Thanks for anwering SueBear. Did you have your J-Pouch done at Scripps in La Jolla? Did you have Dr. Worsey do it? I just met Dr. Worsey about 2 weeks ago, it seems he has figured out my problem (blind loop - gets infected); he wants to remove this loop and maybe redo the anastamosis. He told me that most people who have had a STC will have BM's 4 - 8 times a day but I am excessive with somedays as many as 20! My subtotal colectomy was done because I always had pretty bad constipation, although they didn't refer to it as "colonic inertia" they just said I had a very long, redundant colon that sometimes got twisted. It seems that most of the people on this thread (Ostomies) who have had the same surgery have had very different results from what I have experienced! Is there anyone out there who has had a subtotal colectomy with ileo-rectal anastamosis and are several months to a year post surgery? If so, please write and tell me how you are doing now? I am so scared to have this surgery because I have been housebound for months and I am as weak as a newborn baby! I keep telling my doctor of this concern and he says "your strong enough for this surgery." I am 57 years old; up until the last year I stayed very active and always felt quite strong! All advice is welcome.

Thanks,
Gilda

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/23/2010 1:46 PM (GMT -6)   
Gilda,

This surgery will probably give you your active life back! I did not have my surgery done at Scripps but at USC. I do know many people who have had colorectal surgery at Scripps and have raved about the surgeons. Just that fact that Worsey identified your problem and has the talent and experience to fix it should be reassuring. You will get better.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/23/2010 4:11 PM (GMT -6)   
Sue, Thank-you so much for your reassurance; I feel better already! I do think that Scripps Memorial is a very good hospital. I know that I have to trust God (and trust my surgeon). I am still scared about having surgery in my "weakened state" but at least I will be able to get a lot of rest at the hospital. They think they can fix the "blind loop" laporoscopically. If necessary they will go to an "open" surgery. I think it's fantastic that you live "med-free" after having had a J-Pouch! You don't even have to take Lomotil or Immodium?

Hey, where do you live in California? Maybe we can get together sometime. It really is good to have friends who understand what these types of medical issues do to a person. Once again, thanks and I am glad that you are feeling good these days!

Gilda

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/23/2010 4:12 PM (GMT -6)   
Sue, Thank-you so much for your reassurance; I feel better already! I do think that Scripps Memorial is a very good hospital. I know that I have to trust God (and trust my surgeon). I am still scared about having surgery in my "weakened state" but at least I will be able to get a lot of rest at the hospital. They think they can fix the "blind loop" laporoscopically. If necessary they will go to an "open" surgery. I think it's fantastic that you live "med-free" after having had a J-Pouch! You don't even have to take Lomotil or Immodium?

Hey, where do you live in California? Maybe we can get together sometime. It really is good to have friends who understand what these types of medical issues do to a person. Once again, thanks and I am glad that you are feeling good these days!

Gilda

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/23/2010 6:02 PM (GMT -6)   
Gilda,

I live in Santa Barbara and had my surgery in Los Angeles 9 years ago. Yes, I am med-free. I only take lomotil when I do 100-200 mile thru hikes in the Sierras. Remember, you might be weak but many people have gone into these surgeries near death will illness so don't worry. And if you are weak there is no better place to be than in the hospital!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/23/2010 8:42 PM (GMT -6)   
Gilda, it is so good that they found out what the problem is....so, you are ill because of chronic infection, kind-of like pouchitis, but in the small loop of small intestine? Are you on any antibiotics now?

How was the gastrograffin enema? What made them choose gastrograffin over barium? I am pretty sure my doctor is going to recommend that I have a barium enema....that scares me and makes me worry I may be unable to get all the barium out....

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/24/2010 12:48 AM (GMT -6)   
Hi answers4me2, You are correct about the "blind-loop" getting infected just like a j-pouch can. I have been taking an antibiotic called "Xifaxan" off and on for the last year. I had a subtotal colectomy just over a year ago at a hospital 10 hours north of san diego. The surgeon has kept in touch with me (by phone) for the last year. He has felt really badly about how much I have continued to suffer since the surgery. Actually though, the surgery did serve its purpose in making it easier for me to have a bowel movement but then I started getting sick in so many other ways. All he could suggest was that I take Xifaxan because he said sometimes people get SIBO (small intestine bacterial overgrowth). The Xifaxan kind of helps but not nearly enough. Finally my gastro and new surgeon here in San Diego have figured out why I am so very ill. I can't exactly explain why I now have this "blind loop" of small intestine but I do know that some waste exits my body easily and some gets stuck for a while/long time in this "blind loop." They are now having me take Cipromax twice a day; it helps somewhat but really I feel so sick still that I am just praying to make it for another 3 days until the surgery! I am "burning up" one minute and "freezing cold" the next. I can't eat because it is so unappealing and when I do I get all infected inside . . . I can tell because of the severe and painful diarrhea that always happens a few hours after eating. Anyway I told both my gastroenterologist and my new surgeon, when they suggested doing a Barium Enema type test, that I was really scared to have them use Barium. Then my doctor said, "actually most of the time we now do gastrogaffin enemas; which is a contrast that is easy to expel." When I asked if it would be o.k. for me to take a Vicodin prior to the test my doctor said, it's o.k. but the test only will last about 5 minutes because you don't have a colon and we are just going to look at the rectum, the anastamosis (resection) and go a little ways into the small intestine. Anyway, I don't think I would have even needed the pain pill. This test wasn't bad at all. It went quickly and I felt no pain. I sure hope that you can convince your doctor to do this type of test rather than use Barium! Good Luck to you.

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/24/2010 1:06 AM (GMT -6)   
Sue, You have been such a life-saver today! Thank-You again and again. Are you the moderator for this thread? I noticed that you have been posting for years and continue to do so even though you sound like you are healed and could move on and forget about all of this misery! I always hope that one day I can be healed and be available to support any who need it. I am amazed at the hikes you go on; 100 -200 miles! If you don't mind my asking; how old are you? I am curious because you are so healthy with your J-Pouch that you are med-free plus you are able to be so active.

I guess I will make it thru surgery o.k., weak or not. Today I weighed myself and I am down to 108 (I weighed 135 pounds a year ago). It has been scary because I have been losing at least 1/2 pound a day for the last two weeks! Anyway I am going to be positive and know that within a few days of my surgery, I should be able to eat and maintain some of my nutrition. Maybe we can meet up someday in the future (I live in the north part of San Diego County) and go for a walk . . . . please no 100 mile hikes though!

Gilda

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/24/2010 8:45 AM (GMT -6)   
Gilda,

It's a vicious cycle, you're weak because you're ill and need surgery but you feel to weak to have surgery. You know that only surgery is going to reverse this downward spiral. I am 51, and yes, I love to hike. One of the big reasons I had surgery was because I had no quality of life with UC. So, I have been making up for lost time since regaining health. I am not a forum moderator but I do feel that it is my responsibility to give back what I have received (good health) and share my experiences with others and to give people who are suffering a morsel of hope. It gets better and I am living proof of that. I will be thinking of you on Tuesday and keeping you in my prayers.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/24/2010 9:09 AM (GMT -6)   
Gilda, is the doctor going to resect the loop of small intestine since it is infected?

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/24/2010 3:05 PM (GMT -6)   
Yes, the doctor is going to resect the "blind loop" and change the anastamosis to an end-to-end (small intestine to rectum) so this can't happen again. It is quite confusing to explain but basically I think he is going to "cut-off" most of the blind loop and then re-do the resection point (anastamosis). I sure hate to lose any more intestine but I don't think he has to take much. I just want to be able to eat and not have to constantly feel like I have to use the bathroom! Good Luck to you also!

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 4/24/2010 3:14 PM (GMT -6)   
What about drinking Ensure for a few days? Do you think that'll affect it?

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/24/2010 3:42 PM (GMT -6)   
Good suggestion; I will drink more Ensure. It seems to go down well and not cause too many problems. Thanks.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/26/2010 7:15 AM (GMT -6)   
Gilda~I'll be thinking of you!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/26/2010 11:05 AM (GMT -6)   
Ohio76 - Thank you so much. They are admitting me today rather than tomorrow as I am in so much pain! I hate to think of them doing anymore surgery and now they have to take off the "BLIND lOOP" OF SMALL iNTESTINE; but I guess whatever they can do! It may be a week or more before I can write again.

Has anyone heard from Lizzie?

Thanks,
Gilda

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 4/26/2010 12:44 PM (GMT -6)   
Gilda....you have a lot of people thinking of you...you WILL feel better soon.

Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 4/26/2010 2:33 PM (GMT -6)   
Good luck gilda - Life will be much better soon:)
Diag proctitis 97 - major flare and extension to left sided colitis Aug 2006 - present.

I bled every day from Aug 2006 (I quit smoking in June 2006) to Jan 2010.

Imuran (Azathioprine) game me liver damage. LDN no luck.  Asacol and mesalazine enemas - seemed to make worse. Lots of Prednisone :(  No luck on drugs!

JPouch, total colectomy and ileostomy (part 1) completed Jan 2010 :)
Takedown (part 2) April 15 2010.

UC no more!!!
 


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 4/27/2010 10:20 PM (GMT -6)   
I hope all went well....When you are able please let us know how you are doing
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 21, 2018 8:10 PM (GMT -6)
There are a total of 3,005,594 posts in 329,243 threads.
View Active Threads


Who's Online
This forum has 161784 registered members. Please welcome our newest member, Thunderdaytona.
258 Guest(s), 9 Registered Member(s) are currently online.  Details
SoMuchFun, Mind body spirit, acarined, Kent M., Fegyduck7, Notime4lyme, Michael_T, FLBeachgal, Roadranger82