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Crohn's Disease Forum » Surgery » Time for more surgery... :-(


06-12-2011, 02:24 PM   #1
Tami Lynn
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Time for more surgery... :-(

Hello fellow Crohnies!

My last resection was in 2002 when I had a tennis-ball sized mass (turned out to be a fecalith) completely obstructing my lumen. That was a really rough operation, as I had been so very sick for so long before surgery finally took place that it nearly killed me. Then to make matters worse, the incision got infected and I needed to be re-opened in my hospital bed...on my birthday no less!

That left me with a large open wound that needed to be stuffed with a sterile, wet dressing until it healed (looked like raw steak). I've read a few stories where others have had similar experiences with this sort of thing happening.

The GOOD news is that I have not had any episodes with active CD since before my last surgery. The bad news is that the last surgeon left two strictures that have begun causing more frequent partial bowel obstructions and an overall deterioration of health recently: problems such as regular partial bowel obstructions, vomiting fecal material, and giving me seriously dilated bowels around the stricture areas. I started experiencing some strange new symptoms as a result of the problems, as well as losing weight, so I decided to take my surgeon's advice (which I don't always do) and make a decision to have elective surgery (rather than wait for emergency surgery) before a 'non-issue became a major issue' (his words).

I am supposed to arrive at the hospital tomorrow at 10 a.m. I'm guessing surgery will take place somewhere around noon. My surgeon tells me that it will take WAY longer to cut through all of the abdominal adhesions left from the previous 5 surgeries than it will to perform the actual resection and/or strictureplasty once they find the area they need to work on.

The consent form I signed was for an open laparotomy (exploratory surgery) with a "possible resection and/or strictureplasty" I am hoping and praying that this operation will leave me in a better, instead of worse condition that I have been in these past 9 years. Overall, I have enjoyed a greater quality of life since there has been no active and obvious flare ups. I'm concerned that perhaps I could be making a bad decision to allow them to cut me open again and that it may make matters worse rather than better for me.

I also just recently found out one of my wonderful Internet friends just died on the operating table during surgery (like 2 days ago). It was NOT what I wanted to read! She didn't have IBD though. She was having other problems.

I'm also concerned that the incision may get infected this time, as I will be in the hospital recovering on my birthday again, and one time to have that happen was enough to last me a lifetime! What a nightmare! Am I risking a lesser quality of life to allow this operation to take place? There are so many risks, possible complications after abdominal surgery ie: short bowel syndrome, more bowel obstructions, adhesions, etc. I pray I am making the right decision.

I'm trying to think on the positive side of things. Hopefully the surgeon can fix the last scar I got when the incision infected. I ended up with what looks like a miniature butt crack on my belly since it was left to heal open and sort of turned inward. Maybe some free plastic surgery...nip tuck? Also, if there are no more visible strictures, then if he takes care of these two...perhaps I will be free and clear for a long while? Maybe I could even eat corn again one day?! Okay...so I'm thinking REALLY positive here!

To be honest, I'm dreading tomorrow with a passion. I swore that if I ever needed surgery again (after the hellish experiences from my last one) that I just wanted my husband to shoot me first! I am planning to bring my laptop to the hospital with me this time, which will be a first. Actually, I'll probably have my husband bring it out in a few days, as I doubt I'll feel up to it right away.

I would appreciate any and all prayers for no infections, wisdom for the surgeon to do whatever would be best for long-term remission and problem-free eating, and a quick and speedy recovery with no complications.

Thank you for allowing me to vent and share here.

I'll be stopping back in here (hopefully) sometime next week.

God bless!

-Tami
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-Tami

"The only thing worse than being diagnosed with Crohn's disease 25 years ago, was when my daughter got diagnosed with this dreaded disease 4 years ago and having to stand by and watch her suffer with the same things I've dealt with for most of my life and feeling so utterly helpless to do anything about it!"
06-12-2011, 03:21 PM   #2
Grumbletum
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All the very best, Tammi. You've been through so much and had some hard decisions to make. Hope the surgery goes well and hear from you soon.
Helen xxx
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
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Helen x
06-12-2011, 03:41 PM   #3
Grant
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Good luck Tami, sounds like you had all your worst experiences in one go. Your due a straightforward surgery with no complications-I hope it happens that way for you. Dont forget the surgeons always have to tell you the worst case scenario-it doesn't mean it wont be straightforward.
Best Wishes
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
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06-12-2011, 09:45 PM   #4
ameslouise
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Hi Tami - Just wanted to pop in and wish you good luck tomorrow! I hope the surgery goes well and that you are indeed feeling tons better after your recovery.

So sorry to hear about the loss of your friend. That is always tough to go thru, and scary when you are about to hop on the table yourself.

Hang in there - it will all be over soon! Fingers crossed for you - Amy
06-12-2011, 10:38 PM   #5
Crohn's Mom
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Hi Tami ,
I just want to wish you the best of luck with your surgery!
Fingers crossed that you will have no infection and will be able to eat whatever you want for a very long time!


~T~
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and Austin (18)
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06-13-2011, 11:21 AM   #6
Lisa
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Good luck with everything - looks like you are probably under the knife by now...
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
06-13-2011, 11:34 AM   #7
closedingirl
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Good luck and I hope all goes well and recovery is easy.
06-13-2011, 12:20 PM   #8
e13 boy
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Hi Tami,

I just want to wish you every success with your pending operation.I hope it will give you a better quality of life.
This time 3 years ago i was 2 weeks away from my 9th operation(2nd resection).Back then i feared what life with a shorter bowel would be like.I feared the worst of having to live with an even shorter bowel and the same old story of the CD slowly getting worse again.14 months on from that operation i found the treatment which worked like a dream for me.Despite all the operations i've had i now lead a normal life.My only 'restrictions' are not drinking Alcohol or eating spicy food (intestinal rush - sure you understand!).
I hope life improves for you once you are back home again.

Best Wishes
06-19-2011, 04:19 PM   #9
Tami Lynn
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Thank you for all of your replies and well wishes. I just got home from the hospital today. Everything went about as well as could be expected and I'm just going to ride out the next 11 weeks of recovery and hope to be back to a semi "normal" life again.

The surgeon did a strictureplasty on a very old, long, fibrotic stricture. The good news is he did not see ANY active inflammation, but he did say that the stricture was so small that he couldn't even fit the tip of his pinky finger inside. He also said that the bowel proximal to the stricture had dilated and ballooned to several times its normal size. He said it may never return to normal, but that he expects it to regain full functionality.

I will get more details on the exact procedure he performed after me post-surgical visit.

I woke up with no NG tube, which was a first ever for me with this type of surgery. No sign of infection thus far (thank God), but it does appear I may no longer have a belly button! It looks like he sewed right through it! The incision is about 8 inches long: beginning just under the breast bone and ending above the pubic bone.

I had a coughing spasm the other day - boy was that rough! I know it's always hard to cough after abdominal surgery, but when they cut you right under the breast bone, it feels almost impossible.

Over all, my birthday wasn't half bad...all things considered. I was able to have Japanese frozen yogurt that day which my hubby brought out to me. I'm including a photo here.



I'll post more later! Thank you again!

-Tami *)
06-20-2011, 06:01 AM   #10
Tami Lynn
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Thought I'd go ahead and post an image of my "battle scar". I've never actually allowed anyone to take my picture or a photo of my incisions for the past 3 operations, but since I believe (or am optimistically hoping) this will be my LAST one, I felt it should be commemorated with a photo. ;-)

06-20-2011, 07:08 AM   #11
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Tami

So good to hear that all went quite well for you. Now take care, rest up, relax. wishing you a speedy recovery.
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