Why not surgery?

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ski bum
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Date Joined Jan 2007
Total Posts : 451
   Posted 3/21/2008 8:51 PM (GMT -7)   
I had a consultation with a colorectal surgeon this week. I have ~20 cm stricture in my TI. He confirmed I'm a candidate for surgery. I've never had an obstruction, just a lot of pain, bloating, etc. So, why not surgery? Why does everyone avoid surgery like the plague? Why not just cut out the strictured area in my terminal ileum and move on? Why not try for some good years where I can eat what I want, travel, work and play and not live so tentatively? I know the disease could rear it's ugly head again in weeks, months, years or never. Is that the reason everyone tries to avoid surgery? Because it's risky and no guarantee of being disease free for any significant period of time? What about the risk of the medications? Humira's literature indicates there's a 4x (400%) increased risk of lymphoma. I'm taking Humira and still feel crappy. I've been on Pentasa, Imuran, Entocort and now Humira the past 2-3 years and surgery is now looking to me like the best option available. Am I crazy to consider surgery when I haven't experienced an obstruction? Why not schedule surgery at a time that's relatively convenient? So I ask, why not surgery?
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


inflamed
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Date Joined Nov 2005
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   Posted 3/21/2008 9:22 PM (GMT -7)   
Because there is a very high risk of recurrence leading to more surgery. And there is only so much bowel, you don't want to have to keep cutting, eventually you have to stop. Of course, there is a quality of life issue too. If you are miserable now and nothing helps, things are different. If you are feeling okay, or decent, or can feel decent with meds, that might be better than a surgery, which at most is a long fix, may be a temporary fix, or may not help at all. I guess the equation changes based on your starting position.

I have a stricture in my TI too and have been told many times after ER admits that I will be needing almost immediate surgery. So far (knocking on wood) I have been able to get through these times and have many more good times thanks to medicine. I am willing to wait at all costs right now. That would probably change if most of my days were spent with pain. It really is a personal balancing we all need to make. Good luck.
Currently in remission!


pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 3/21/2008 9:50 PM (GMT -7)   
If you feel like it's for you I say go for it, but don't assume that you'll be able to just eat anything and that life will be back to the way it was before CD, sure it could very well be great, and be that way for a long time but there are risks to everything so you have to weigh them out and make the decision for yourself, it's the same as no one can tell you not to get surgery or that you should get surgery, ultimately the choice is yours only.

And although CD is very individualistic, the chances of re-occurance is higher after surgery, it's just the nature of the beast, but you're right, you could very well have a much better life for a period of time if you go ahead and get it done.

Good luck with your decision :)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


teddybearweiser
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Date Joined Oct 2004
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   Posted 3/22/2008 2:24 AM (GMT -7)   
Hi I would leave surgery as a last resort. There are still alot of meds to try first before surgery.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


crohns07
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Date Joined Mar 2008
Total Posts : 12
   Posted 3/22/2008 6:22 AM (GMT -7)   
I had two resections in a 5 month period. I didn't even know I had CD before my first resection. I thought I was having my appendix out. Woke up in horrible pain to find out that I was missing part of my intestines. My surgeon is very against doing surgery on Crohn's patients because of the high recurrence of the disease, especially after surgery. That being said, I didn't have much choice when I had the second surgery because of a twisted intestine, abcess, fistula and obstruction. I sure thought I would have a period of long remission after my first surgery. I wasn't careful about what I ate at all. I don't know if that contributed to my second surgery. I have been much more careful the second time around. I missed over 12 weeks of work last year alone because of the two surgeries, so I'm doing everything I can do avoid having it again anytime soon.

If you feel that surgery is the best option for you, then do it. I know, for me, the second surgery I was looking forward to it because I was in an extreme amount of pain. I've felt pretty good for the last several months since my surgery. I'm still having symptoms of CD, but I'm not having the extreme pain I was before surgery.

yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 3/22/2008 7:35 AM (GMT -7)   
another reason is the high likelihood of developing adhesions, which can cause pain and blockages. it can be a nasty spiral; I know as I am on it. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 3/22/2008 9:17 AM (GMT -7)   
My brother had a resection of his TI 5 years ago and he has been urging me to have surgery for years. If I knew I would do as well as he did, I'd go for it. He jumped right into surgery after only being on Pentasa for about 6 months. He didn't want to try the aggressive medications. He was concerned that he could get colon cancer because he couldn't eat any of the foods that help prevent cancer, like all the veggies. He wanted to schedule surgery at a time convenient for him and not risk an obstruction and perhaps surgical emergency. He has been feeling wonderful for 5 years. At a recent colonoscopy, he said there was inflammation at the anastamosis site, but that he is on Pentasa for that and feels fine. He doesn't understand why I'm taking the heavy duty meds when I can get the strictured area cut out, like he did. (He's a surgeon, so that may explain his philosophy about treatment). Then I read these posts and see that people suffer through obstructions and still don't jump into surgery. I haven't even needed to go to the ER.

Thanks for your responses. Inflamed, can you tell me what medications you're on that have helped you avoid surgery?

pb4 - I'm glad you reminded me about the possibility that I wouldn't be able to eat everything I wanted. I've been fantasizing about my post-op menu for months!

Teddybearweiser - What are the other medications you're referring to? Perhaps Remicade? My doctor has suggested Remicade. However, I've come to believe that my stricture is due to scar tissue (since it hasn't seemed to respond to imuran or humira) rather than inflammation. I don't know of any drug that will relieve the scar tissue.

Crohns07 - that's such a bummer that you needed a second surgery so quickly. Were you on any meds after the first surgery? I hope your second surgery gives you long-term relief. The fear that the crohn's could return soon after surgery is the main reason I haven't scheduled surgery already. Another reason is the risk of developing adhesions, as Yogaprof pointed out. I just defended a lawsuit against a physician for allegedly causing a perforation of the TI in a patient with extensive adhesions who needed a salingo-oophorectomy (removal of tube and ovary). She was having pain because of her adhesions and when the doctor lysed the adhesions away from the tube and ovary, he may have caused damage to the outermost layer of the TI, which perforated some time post-op resulting in a 2 month hospitalization, 9 additional surgeries... The patient had suffered with adhesions for years and wanted relief, and ended up in worse shape. So adhesions are another thing to worry about!

So, I'll probably end up mired in indecision until I end up needing emergency surgery, which is what I'm trying to avoid, which takes me back to my original question!!!
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/22/2008 11:33 AM (GMT -7)   
I still say, go with your gut feeling about it, you could end up as good as your brother, but you also have to be prepared that there's a chance that you won't...you're 50 and you still have alot of life infront of you so you definitely have alot to think about the the decision is yours.

Good luck!

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 3/22/2008 6:36 PM (GMT -7)   
6mp worked for me, but the results are different for all. I've been luckier than a lot of people.
Currently in remission!


Crohn'snme
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Date Joined Feb 2007
Total Posts : 734
   Posted 3/22/2008 6:59 PM (GMT -7)   
Goodness if I had to make this decision I would be as confused as you are. There's no good answer, is there?? Just like everything in life nothing is certain and all decisions aren't without mistakes. Good luck and follow your gut, so to speak.

butterfat
Regular Member


Date Joined Feb 2006
Total Posts : 31
   Posted 3/24/2008 12:46 PM (GMT -7)   
I also have a stricture which is scar tissue and thus not going anywhere no matter what medications I take.  I have resisted surgery for a while but I am planning to have a resection or strictureplasty in a couple months.  I feel great right now but when I do have a flare, and there is inflammation on top of the scar tissue, then the stricture is very annoying and I have to be very careful about what I eat (smooth/soft foods, and very tiny meals).  I think surgery to remove a cold stricture is very different from surgery to remove the actively diseased part of the bowel.  We aren't hoping the surgery will "cure" us, we are just preventing serious physical complications like obstruction or perforation.  I'd rather do the surgery when I'm feeling well and can recover nicely than in an emergency situation when I'm weak and sick to begin with.

Diagnosed with Crohn's disease 11/05
SCD since 12/05
Asacol 8 x 400mg per day


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 3/24/2008 5:48 PM (GMT -7)   
butterfat- well said. I can feel the strictured area at night when I'm laying in bed unable to sleep due to abdominal and back pain. It feels like a tube. That makes me think it would be easy for the surgeon to get get it out. Is a general surgeon or colonrectal surgeon going to do operate on you?
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 3/24/2008 5:54 PM (GMT -7)   
Only have a colorectal surgeon operate on you!!!!!!!!

ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 3/24/2008 7:07 PM (GMT -7)   
That's what I thought chroniemomx2, but my GI referred me to a general surgeon. I did my due diligence though and consulted with a colorectal surgeon instead. My GI said that a resection of a stricture in the TI is a relatively simple procedure and a general surgeon would be appropriate. I asked another GI that I know from work and he said that I shouldn't go to a colorectal surgeon because the TI is not the colon or the rectum. He recommended a general surgeon that only operates on the bowel, but I wouldn't want surgery at the hospital he works out of. I felt very comfortable with the colorectal surgeon I saw and would want him to do the surgery, if/when I decide to go through with it.
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/24/2008 7:33 PM (GMT -7)   
Hi Ski bum,
Please make sure the surgeon you see is experienced with CD! I was initially referred to a general surgeon who turns out was clueless about CD as well as how we don't heal like normal folks. I really suffered! Three incisions that weren't necessary! My current colo-rectal surgeon really knows CD and I trust that he will perform surgeries with CD in mind. He consults with my GI Dr. about treatment and drugs post-op. In fact, it was he who suggested to my GI that my condition needed Remicade. My GI agreed but unfortunately my body disagreed with 2 reactions. But thats another story. ;-) Bottom line -- I'd ask all the surgeons about their experience with CD. I feel for you! Such a tough decision!

ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 3/25/2008 12:12 AM (GMT -7)   
FallColors - I didn't ask the surgeon directly if he has a lot of experience with CD. He seemed to know what he was talking about tho. He said he has patients who continue to treat with him after their surgery. He would put me on Pentasa. My GI said he would want me to continue on Humira after surgery. The surgeon said he thought Humira was way too aggressive. Once the diseased area is resected, there would be no need to be on such an aggressive med. I like his way of thinking, but I'll have to weigh the risks of the medications vs the risk of the disease coming back. I guess that's a whole new topic. Why did you end up having 3 incisions?
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 3/25/2008 5:06 AM (GMT -7)   
i recently a my ti removed before that i never went to er for obstructions etc,i was in alot of pain etc,the surgery wasn't easy.but i defintly think it was worth it.if the drugs arent working why wait for things to get worse? my partners mum was sick for ages and the doctors thought she only had ibs in the end she need a colectomy.After surgery you need to be careful still bout wat you eat,if you haf a temp bag you dnt need to worry to much,just make sure you chew well and dnt eat the things they tell you not to eat.I had  a temp bag for 2 months and it was ok.If your in pain etc like i was surgery is good i dnt get pain like i use too that was horrible,anyway good luck
dx 17 aug 2007
20 yrs old
23 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed  100mg azamun


butterfat
Regular Member


Date Joined Feb 2006
Total Posts : 31
   Posted 3/26/2008 12:29 PM (GMT -7)   
ski bum, i am meeting with a general surgeon next week to discuss my options and what is involved in the different procedures. I honestly don't know yet if he will be doing the surgery or if he will refer me to a colorectal surgeon. I guess that will be one thing we discuss. The big question in terms of recovery seems to be whether they can do the surgery laparoscopically or not. I hope so but I have heard varying reports.

It's not fun to be constantly reminded that your intestines are all out of sorts. I have also spent many nights lying awake watching one side of my abdomen swell up like a balloon because things were having trouble getting past the stricture. I don't take the surgery lightly but I do look forward to feeling slightly more normal (hopefully) for a while after.
Diagnosed with Crohn's disease 11/05
SCD since 12/05
Asacol 8 x 400mg per day


Aimee =)
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Date Joined Jun 2004
Total Posts : 1020
   Posted 3/26/2008 3:37 PM (GMT -7)   
I went through this last year. I met with the surgeon, we talked about the procedure, and I was ready to sign on the dotted line when I heard about Humira. My GI hadn't had a patient on it yet - it was still not approved - and I figured I had come this long without eating, surely I could go another month to give it a try. Thankfully, for me it worked.

Surgery was last resort for me because:
- the recuperation period. I work FT, am young and new in my career, and didn't want to be out that long
- the money. We are still paying off Remicade infusions from 3 years ago. Financially we are barely making it by.
- there is only so much to cut, and I knew it would come back. At 28 years old, did I want to start cutting already?
- the complications of surgery and the issues that we'd have to address afterwards. Like B12.
- knowing that I could go through all that pain and money and still be right back in the same spot 6 months later.

It WAS my only option if Humira didn't work. Nothing else was working and I had already spent 2 weeks in the hospital and dropped 75 pounds. I'm thankful I didn't have to go there - yet.

I would seek out every other option first and then I'd have no qualms about surgery. I couldn't live with the pain. With the liquid only diet. With the low energy. It wasn't a life.

ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 3/26/2008 5:56 PM (GMT -7)   
Aimee - that's great that Humira worked for you. You certainly give good reasons for making the choice you did. I think Humira is not really working for me is because the stricture I have must be due to scar tissue. My CT scan showed there wasn't really any progression of the disease in the past 1 1/4 years, and that's probably due to the Imuran and the Humira. But that still leaves me with the scar tissue. I have long periods during the day where I feel OK and that's when I think I should just stick things out for awhile on meds and hold off surgery. But then every night when I lay awake in pain, not knowing what to do with myself to ease the pain and pass the time until it lets up when I'm so exhausted, I'm ready to cut the flippin' stricture out myself!

Butterfat - good luck with your appointment and your decision. I forgot to ask my doctor about whether he does these things through a scope. I think I rather have an open procedure. I've been told that the surgeon needs to run the bowel, which requires manual inspection. The scope doesn't allow the surgeon to feel the bowel. You're right about the constant reminders that our bowel is out of whack - no fun. Let me know what you decide. I think my mind's made up (as long as I don't change it)!
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 3/26/2008 6:22 PM (GMT -7)   
Hi Ski Bum,

My general surgeon thought he knew what was wrong with me but it turns out he didn't know a fistula when he encountered it. So long story short -- he got a "learning experience" but I got 3 incisions that I didn't need. I was quite ill (high fever and very bad abcess) when he said "I don't know what else I can do for you". He later told me he was going to pass me off to a colorectal surgeon, but I beat him to it and saw one myself. My colorectal surgeon knows CD and he fixed the problem ASAP. He knew exactly what was what. Actually when I went to the ER for my recent abcess, they said they ddin't want to touch me -- they said only a specialist who knows CD should treat me. I agree!

I question what your general surgeon said about Humira post-surgery. Does he understand that CD frequently attacks surgery sites?? Seems to me this is even more reason to take it!

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 3/26/2008 6:39 PM (GMT -7)   
Hi I had to have the surgery because meds weren't working for me and my intestines wern't doing so good my small intestine was becoming large .THe pain and horrible gurggling was not good and I could hear sounds like running water. I could see my abdomen bulging in places so I did the surgery I did not have pain afterwards because they gave me a epidermal so things were good that way. I was glad to have the surgery one GI I seen said there comes a time when it cannot be put off and I sure do believe that. My BM's are very normal and have not had any pain in 9 weeks . I can eat now. It was sort of taken out of my hands .I hope you make the best decision for you but pain all the time is no fun. lol gail

ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 3/26/2008 9:43 PM (GMT -7)   
FallColors - the colorectal surgeon told me he would want me on Pentasa after the surgery. He said that once he removes the diseased area of the TI, he thinks Humira would be too aggressive a medication to be on. He did mention that the CD could return at the anastomosis site (or elsewhere), but thought Pentasa would help to prevent that. I'm going to research to see if there's any literature on the different recurrence rates of active disease post-resection on patients who've taken Pentasa vs. imuran or 6MP vs Remicade or Humira. I wish I could just trust my doctor, but I've already received two different responses. GI: Humira; colorectal surgeon: Pentasa.

Gail - I'm glad to hear you're feeling better after your surgery. Pain all the time, at night anyway, is absolutely no fun. I'm laying in bed right now, listening to my husband snore, and not able to sleep because of the pain. It's hard to function on 3-4 hours of sleep/night and I'm really tired of it. I am getting some high scores in text twist and bubbles while I pass the night away. (o;
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 3/27/2008 1:25 PM (GMT -7)   
FallColors.....that's a good reminder to all of us to only have a colorectal surgeon operate on you!!!!!!!! This cannot be stressed enough!
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