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Crohn's Disease Forum » Surgery » Considering surgery


08-05-2013, 12:29 AM   #1
DetDan214
 
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Considering surgery

I've had Crohn's for 16 years now. Still on first line drugs of 800mg Asacol 3x daily. My symptoms have been pretty mild. Occasional diarrhea, with cramps. I try eat right, which usually keeps it under control. I had a flare up last weekend, and had the option of surgery mentioned. I'm 30 years old, work as a firefighter and paramedic, so when I do have a flare up of pain it's always at the worst time. Has anyone had success with surgery? My concern is having to have another surgery in 15 or 20 years which will cause further problems. I have about 16" of my small intestine that's involved.
08-05-2013, 12:53 AM   #2
Jennifer
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Hi DetDan214. I had 8 inches of my ileum and cecum removed. I had a 14 year remission following surgery. Its not uncommon for the disease to come back at the resection site. When or if it returns is different from person to person. If its mainly scar tissue then its very possible that surgery is needed because it can lead to other complications like a bowel obstruction which can be life threatening. Surgery is meant to be a last resort. Talk to your doctor about a strictureplasty. I'm not sure how much of the bowel can be used for this procedure (16 inches may be too much but best to find out for sure).

Lots of members have had resections. Check out the Surgery Story thread here: http://www.crohnsforum.com/showthread.php?t=30212
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
08-05-2013, 01:29 AM   #3
helenbussey
 
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Hi Detdan214. I'm in a similar situation! I've been given the choice of surgery or taking Azathioprine! The surgery will remove a very narrow scarred section of my small intestines. Having read the side effects of Aza, which sounds very toxic, I think I've decided on surgery! It's not a cure but it will give me a better quality of life for some years (hopefully!). Hard decision, going to hospital today to meet specialist! Good luck with your decision. Helen. (Only diagnosed in Feb 2013)
08-05-2013, 04:09 AM   #4
Marx
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Hi Helen, how bad are your symptoms? I ask because aza v surgery is a no brainier really. If aza can maintain it then I would try that. I've been on aza for years now and apart from picking up a few more colds than I used to, I don't suffer from any side effects. From what i know, aza isnt the worst medicne you could be on but other people might weigh in and say different. Discuss with your GI and your IBD nurse. I only say this because unless essential, surgery is not recommended. Having said that, a lot of people do find relief after surgery but bear in mind crohns can keep coming back and the operation is a hard process on the body.

I hate taking medication as much as the next guy, and although I'm about to have surgery it's only because I've tried most other routes, namely, immunosuppressants, steroids and biologics.
08-05-2013, 04:14 AM   #5
Marx
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Hey DetDan, although I haven't had surgery yet myself, just looking around on this forum you can see surgery offers a great relief and quality of life to people. Also people I know personally have success stories. But your concern remains valid, crohns often rears its ugly head again somewhere down the line requiring further medication and surgery. It's a call only you can make depending on your symptoms and how it affects your life.
08-05-2013, 09:03 AM   #6
DetDan214
 
Join Date: Jun 2012
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Thank you all for the advice. I do have scar tissue, but doctors opinions vary. I have 1 doctor pushing for surgery, and the more senior doctor/surgeon is saying it can wait. I'm just tired of restrictions on where I can go because of Crohn's.
08-05-2013, 10:02 AM   #7
Traumanurse
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Hi Dan.

I feel your pain. I was on call for ED and OR and ambulance for years. When Crohns got bad, going on a call was really tough. Ended up having to stop the on call and eventually the ER.

I had Crohns for several years before I had a resection. Waiting until I absolutely needed it. After surgery, was in remission for 12 years. Just had my second resection last month, but was worth the 12 years of relative pain free times.

Now on Humira, and hoping it will decrease the scar tissue this time and adhesions that are the main culprit for more surgery.

I guess, I would just say that everything is relative. If you have a good life, and can take call at the firehouse, maybe you can stick it out a while longer. Then again, when it's time for surgery, it's definitely time.

Good luck!
08-05-2013, 10:20 AM   #8
DetDan214
 
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The concern is, given the scar tissue, I may have the beginning of a bowel obstruction. When I went to the ER for myself 2 weeks ago. It went from my appendix, to a bowel obstruction, to a partial obstruction, to the start of an obstruction, to maybe an obstruction, to we're diagnosing you with Crohn's. So I don't have a lot of faith in the fact I was diagnosed with something I already have. I'm waiting on my PCP to give me a referral to my gastro guy because my insurance needs a new referral every 12 months
08-05-2013, 11:33 AM   #9
Traumanurse
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Sounds like you need to see the GI Doc for sure and a colonoscopy if they didn't do one recently. You really need to know what you're dealing with.

My surgery last month was from scar tissue and a stricture caused by the Crohns. That caused a bowel obstruction, so had emergency surgery. If you can do this as a scheduled procedure, it's a LOT easier recovery, and you're less likely to have complications like I did. This is if scar tissue is the problem like they think.

The unique challenges to you as a medic are the unusual hours and erratic schedule. You probably work 24 or 48. Crohns does better (in my experience) with a regular schedule. I did that for 6 years before nursing.

Keep us posted on what you find out, and keep bugging the Docs.
08-05-2013, 12:39 PM   #10
DetDan214
 
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Thank you so much. I've found if I hydrate with a lot of water and some Gatorade I don't have a lot of issues (other then having to pee a lot). Have you had any success through diet? I do have scar tissue, which was seen by a recent CT, I had a scope don't last year, and was told I was ok. I'm in Michigan, and love the outdoors. Out in the woods hunting or fishing is terrible for a flare up
08-05-2013, 01:09 PM   #11
Jennifer
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With strictures nothing can help heal it as its damaged tissue but to help reduce symptoms from it you can try to eat smaller meals more frequently. Softer items with less fiber (or anything that makes things move through faster) are also a good idea. You want to avoid foods that move through you quickly because the stricture slows everything down creating a bottleneck effect which can cause pain, nausea, vomiting, bloating etc.

I have a stricture right now caused by scar tissue from my surgical site and inflammation from my recent flare. I switched to the low residue diet http://www.crohnsforum.com/wiki/Low-Residue-Diet to help reduce symptoms and have also had many med changes to try and get the inflammation under control. For me the low residue diet at least helps to reduce my symptoms yet if diets don't help to reduce your symptoms and you continue to have partial blockages then you should really consider surgery as a full bowel obstruction is dangerous.
08-05-2013, 01:40 PM   #12
highlandsrock
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Hi DetDan and Helen

I can sympathise with your quandary. I reached the Azathioprine or surgery decision in 2000. A barium follow through had shown a stricture in my terminal ileum that left the bowel about the size of my little finger. I was dead set against surgery as I really hated the thought of going into hospital. My consultant offered me Azathioprine as "the last resort". All went well until 2008 when a routine blood test showed my platelets had dropped dramatically and the blame was put on the Aza. (I'm still not 100% convinced as there is I have no definitive proof). I stopped taking it and my health started to decline.....

If you have a look at my blog the full story is there but suffice to say I ended up under the knife in October 2010 (elective surgery - ileostomy) and June 2011 (reversal). Overall surgery has been a very positive experience and my life is back on track.

So would I plump for surgery or Aza or vice versa? I've thought long and hard about this and would not have changed the way things worked out but that suited my personal circumstances (work, mortgage etc). Am I frightened of hospitals and surgery anymore? Not at all because the elective surgery gave me time to plan ahead and become completely relaxed about what was going to happen.
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08-08-2013, 03:51 PM   #13
xSophiexx
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I personally tried all meds possible before surgery but now wishing i did it sooner as all the meds seemed to mess me up more!!

Helenbussey... i work in Bromley!!
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Ileocaecal Resection 12th June 2013

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08-09-2013, 12:19 AM   #14
Thermo
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Each person is different, In my humble opinion you should exhaust everything prior to surgery. If you have not begun taking biologics or 6MP's then surgery is not the next step by any means. Talk to your doctor about 6MP, get the test done to see if you can tolerate it, if you can but your flaring start the 6mp and steroids and wait the 3 months until it starts working.

Biologics will most likely heal most of your open lesions in your intestines and actually cause you to need surgery in 2-5 years by healing and causing stricturing...however it might not and you could end up never needing surgery. In your particular case going 30 years with the disease in mild form means you stand a better chance of not needing surgery at all but also if you do have surgery you stand a higher chance than everyone else of never needing it again.

I usually recommend surgery to people after hearing their story because for most people we all have the destructive form of the disease, however in your case I don't recommend it. Surgery is an extremely long road to recovery and even afterward you will never be the same as you are removing your Ileocecal valve which aside from other important factors is the only place in your body that absorbs B12 and bile.

Please take the time to watch the youtube video I have posted in my signature titled "Crohn's Disease: Special Challenges of Surgery" as it will show you a great deal of what to expect with surgery and explain why you should use immunomodulation prior to surgery
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Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.

http://www.youtube.com/watch?v=PC2VyIxiWmk
08-09-2013, 01:19 AM   #15
Jennifer
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Thermo no medications are going to treat scar tissue which the OP has. They have dealt with partial bowel obstructions already. That alone makes them a candidate for surgery.

Also they never mentioned which section was involved so there's no guarantee the ileocecal valve would be removed. Also the ileum absorbs B12.

I would suggest stronger medications following surgery if you do go through with it DetDan214 as you do have a lot of scar tissue built up over the years from improperly treated inflammation.
08-09-2013, 01:50 AM   #16
Thermo
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I'm not going to get into a semantics argument with you Jennifer, been down that road before...as everyone with Crohns is currently doing, living with a stricture is possible and is life. The point of medication is to slow down the damage, if he switches to an immunomodulator and his stricture size doesn’t drastically increase forcing him into surgery then he might be able to live with it 5 or 10 more years with the benefits that those medications bring. Bowel obstruction due to Crohns disease is handled different than bowel obstruction due to unknown reasons. They rarely operate on a Crohns patient who checks into an ER for bowel obstruction (At least in the US). They admit you and pump your stomach waiting for the obstruction to pass. Until he is drinking nothing but liquids and cant eat anything else but a low residue diet due to extreme pain that’s an obstruction situation that needs surgery in my book.

He also said 16" of his intestines is involved....I'd bet money when the surgeon gets in there hes taking the whole thing and most of his Cecum, this is another reason why surgery is not always the best option they don't mess around when they get in there.

This man is a firefighter, paramedic and active outdoors man, surgery while in most cases has the possibility to reshape his entire life for positive hes looking at a major recovery time that depending on how his life is setup will drastically alter it. I only wanted to give him my point of view as there is no going back with surgery. In my opinion you will know when you need surgery and will be begging for them to cut you open.
08-09-2013, 02:49 AM   #17
Jennifer
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Waiting until that point can be very dangerous as a stricture does put you in danger of a full blockage. Waiting for an emergency situation is life threatening and not something I'd recommend to anyone no matter what their profession is. We do not deter members from treatment they may need.
08-09-2013, 03:25 PM   #18
Thermo
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Let me clarify my stance on this situation, given my 28 years of experience with this disease including surgery.

Obstruction symptoms are caused by one of two things (Or both) either strictures/scar tissue or from active inflammation. If you immediately have surgery without considering that your obstruction symptoms are due to your disease flaring then you are ill informed.

If you get a CRP and SED rate blood test and it shows a high level of active inflammation in the body chances are high your obstruction symptoms are due to narrowing caused by inflamed intestines which means your disease is not controlled (As typically seen in 5-ASA treatment) If you have surgery exactly at this point you run a risk of the surgeon removing more than is necessary or increasing your chances of a stoma at the time of surgery because all surgeons error on the side of caution depending on what they find when they go in.

If the tests show minimal active inflammation and you still have obstruction symptoms then it usually points to scar tissue and there is no way to clear that without surgery. However even at that point just because it’s causing obstructions doesn’t mean you need surgery right away. Statistically people live with strictures for many years before they cause problems of continual blockage and need surgery. If you have surgery every time you feel obstructed you wouldn’t have anything left. My point is choose what’s right for you.

If you have an elevated CRP and SED rate your doctor should consider ‘shoring’ up this inflamed mass prior to surgery, by using an immunomodulator. Chances are it will either cause you to need surgery as it will heal your lesions so well that it will cause scar tissue to form which will cause further obstruction symptoms. However things will statistically look better when the surgeon goes in.

Or it will heal your lesions and minimal scar tissue will be added and you will be able to push off surgery a little bit longer. However in my opinion (Which is what we are all giving…as none of us are doctors) You owe it to yourself to increase your positive outcomes from surgery by using medication prior. None of my knowledge is given by hunches and guesses and this is classified as a top down approach which is now the approved way to treat this disease rather than the bottoms up approach as when we were diagnosed back in the 90’s by treating with 5-ASA as opposed to immunomodulators.

More resources are cited below. You will educate and make the best decision for yourself and your family but you deserve to hear multiple sides of the story.

http://m.youtube.com/watch?feature=relmfu&v=hcfaC0Qok7E

http://m.youtube.com/watch?v=G-Fmohl0Jws

Last edited by Jennifer; 08-09-2013 at 05:08 PM. Reason: Irrelevant points to topic removed.
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