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Saw Dr. Remzi in Cleveland on Monday, waiting to hear surgery date. I am scared....

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Crohn's Disease
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Posted 11/10/2010 11:23 AM (GMT -5)
 

I saw Dr. Remzi Monday.  I know he is very qualified and I have all my confidence in him, but I admit to being a wimp and scared out of my mind.  He says there are no ifs, ands or buts about it, I need surgery.  I have a stricture that definately needs removing, but he does not know until he starts the surgery if he will do a total colon removal or partial.  I will not know until I wake up if I will wear a temporary bag until everything heals or not.  I hate surprises of this kind.  The worse is not knowing and I am totally in the dark until once this surgery is over with.  So, I am not sleeping with worry and this cannot be good for my Crohns!  Please, anyone with advise out there and has been through this, I would love to hear your thoughts and how you are doing today.  Those who also had this doc, how are you doing??? 

I am a wreck!

Thank you in advance for your support.

Audrey

Posted 11/10/2010 2:52 PM (GMT -5)
I am not familiar with this doctor, but have had two resections myself. It is scary, but I can tell you I felt so much better after I recovered from the surgery, it was really worth it. Tips I can give you is to walk as much as possible afterwards to help wake up your bowels. Expect some explosive diarrhea for a few weeks afterwards until your body adjusts to the changes. Ask for a PCA pain pump, that way you can just push a button when you need your pain meds instead of waiting for the nurse. Its regulated so you can't od on it. And most important make sure you get back on some type of maintenance med afterwards so you don't have to have a repeat surgery. Hugs!
Posted 11/10/2010 3:23 PM (GMT -5)
thank you so much for your help and advice. I just heard that the surgery is scheduled for the 15th of December and pre-op is the 13th. My heart is racing and I feel sick to my stomach. I only had my tonsils out when I was very young and I feel so alone and frightened. I am sure your right and I will feel so much better once I have this done. Did you have a temporary bag with your resection and if so, how was that to deal with? Also did they talk about taking your entire colon at any time and then decided to do the resection. You said you had it done twice. Please let me know what happened, did you get scare tissue that formed a narrowing? Sorry to ask so many questions, but you are the only one I have to ask! Thank you for helping me out and calming my nerves just a tad.
Sending you hugs,
Posted 11/10/2010 3:36 PM (GMT -5)
My resections were at the terminal ileum/cecum area. Which is part of the small bowel and part of the large bowel. I did not need to have an ostomy, thank goodness. I was told they were going to do it laproscopically but I woke up to having a full open incision because they said I had so much adhesions and scar tissue that had to open me up to completely fix stuff. The second surgery was only 3 years later because I didn't go back on maintenance meds afterwards and developed another stricture at the reconnection site. Yes I did have a complete obstruction thats why I had to have the surgeries.

You might want to call your family doc or the surgeon and ask them if they can give you something to help your anxiety. I take the lowest dose available of Xanax when my anxiety acts up and it really helps to stop all that nausea and diarrhea the anxiety causes. All will be fine, trust me. I know its scary, and I won't lie it will be painful, BUT...they give you really great pain meds to help ease the pain. Hugs!
Posted 11/10/2010 3:55 PM (GMT -5)
thank you again. My area of narrowing is in the sygmoid colon. I so wish not to have a ostomy even for a short period of time, but if the doc has to I have no choice. He is going to try for the laproscopic surgery but not knowing for sure just like your surgery if he will have to do a full open proceedure. I have heard many talk about having scare tissue at the sight of resection and having to get additional surgeries because of this. I am so sorry you had to do this. I hope you stay in remission and feeling well. Thank you again for your support.

Audrey
Posted 11/10/2010 4:56 PM (GMT -5)
Audreys~I have an ostomy now, but I've had a few resections over the years! The doctor will do what is best for you...they are very experienced there and will take good care of you...they use the latest in technology:)

I agree with Nanners, call your surgeon or your family doc for something to help with anxiety...it will help!

During your pre-op the WOC Nurse (ostomy nurse) will probably mark your belly for an ostomy. It is standard when the doc isn't sure what they'll find and it is BEST when you are marked since an incorrectly placed stoma can really be hard to care for shakehead

Just think how much better you'll feel after your surgery...it is amazing smilewinkgrin
Posted 11/10/2010 5:23 PM (GMT -5)
Audrey, If you have a well qualified surgeon, you already have the best chance for a successful surgery. He has to tell you about the worst possible scenario (a bag) - I'm sure he will make the best possible choices for you. As far as the scar tissue is concerned, there are different ways to reconnect the intestine so that there is maximum opening which can reduce the chances of scar tissue causing an obstruction. Again, a good surgeon will make the best decision. Hope you can rest easy--you've already put yourself in the best possible position for success by choosing a well qualified surgeon. I've had three resections, and very few problems. Best wishes for an uneventful surgery and a speedy recovery. Moodindigo
BTW, my third surgery was 15 years ago and there is still no obstruction at the anastomosis. Also, as Nanners, it was at the terminal ileum--where small and large intestine connect.
Posted 11/10/2010 6:37 PM (GMT -5)
Audrey, I had a resection of my sigmoid colon 7 days ago. They do have to prepare you for the possibility of an ostomy. The nurse will even visit with you a day or so before the surgery to mark some spots for the surgeon in case they need to do one. I ended up not needing one. Honestly, I just wanted to be fixed up and out of pain. If you have a surgeon that you trust, that's the best you can do for your peace of mind. Certainly get something for your nerves. I met with a medical hypnotherapist and was not too anxious for the entire thing. It worked like a charm for me. I've had horrible anxiety and high BP before other minor procedures and my BP was actually low throughout all of this. Good luck to you.
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