Why not just have surgery and be done with it?

New Topic Post Reply Printable Version
36 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Mr. Denial
New Member


Date Joined Jul 2009
Total Posts : 17
   Posted 9/7/2009 8:04 PM (GMT -7)   
It has been a little over 2 months since i had a 2nd hospital stay for a blockage. Originally diagnosed with CD 30 years ago, but apparently it's been in remission, or maybe the CD was doing it's thing while i was taking 2 or 3 imodiums a day. The doc has done all kinds of tests and now wants me to have a double balloon enteroscopy. Has anyone had this procedure? I've tapered the Pred's down to 20 mg, Flagyl, Pentasa, Prilosec, and received first injections of Humira last week. Also have been faithfully following the SCD diet - and nothing seems to be helping (although i haven't been back to the ER). I haven't had a firm BM since coming home from the hospital, but my real concern is about all the aches and pains, loss of appetite, insomnia, overall weakness and since starting the Humira last week - major headaches and chills yesterday and today. My brother is a surgeon, but does not specialize in GI issues. He said tonight, if it were him he would have surgery and be done with it, hopefully for a good bit of time. Does anyone agree with this kind of elective surgery instead of putting all these heavy duty drugs in our bodies. You should know, we have narrowed things down to a diseased area of my ilieum - to what extent we're not sure. My brother says why bother with the balloon thing - the surgeon will know in 60 seconds once he has a look. He also said that I have a stricture probably caused in part by scar tissue and so no amount of meds and diet will help. He says, have 2 or 3 feet of the small intestines removed and be done with it! Anyone agree or, disagree?

dave

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/7/2009 8:20 PM (GMT -7)   
Your reasoning sounds pretty logical to me, especially if you don't think you're tolerating Humira well. I was somewhat in your situation 6 months ago, except you sound somewhat worse off and you've gone 30 years and I've only gone 10 and I'm only 33. So I went with the Humira, but if it stops working and I can't get back on the 6MP successfully I would have surgery.

Mike
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Mr. Denial
New Member


Date Joined Jul 2009
Total Posts : 17
   Posted 9/7/2009 8:28 PM (GMT -7)   
Thanks Mike - When I was first diagnosed at 35 the doc, at the time, recommended i avoid surgery unless absolutely necessary because the disease was known to often reoccur. At 65 i look at things a little differently. I'd like to get back to my sailboat, but right now i couldn't pull up the anchor!
Prednisone (20mg), Flagyl, Pentasa, Humira, Prilosec . . . hospitalized for two obstructions, no surgery to date, CD in ileium


flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 9/7/2009 8:29 PM (GMT -7)   
I Agree!... all the drugs for CD have some nasty side-effects eventually. I've had the balloon test done. Not the greatest. Wish they would have offered some pain meds. I think that they are afraid because of your blockage to do a colonoscopy or a barrium test? ...maybe that's why they have chosen the balloon procedure..???
I ended up having 18 inches taken off in the area of the illieum. Side effects because of loosing those valves are urgency...I still take immodium daily. However, I don't have blockage at this time and am considered in remission.
What you would gain is, the infected blocked area would be gone..feverish feelings and nausea should subside. This could all be worth it.
I am a believer in quality not quanitiy. I want the time spent here to quality. I don't want to always be the one that stand aside...waits...I want to participate in as much as possible. So, I have had my surgery's with the hope of my quality being better. Good Luck to you!
Flowery
 41 yr old woman with 12 surgerys under my belt. Diagnosed in 2005 CD. PTSD 1999. Gullbladder taken 2000, Hysterectomy 2005, Back surgery 1998 with herniation L-4, L-5, S-1. Two-Re-sections on small intestine, total of 18 inches taken out 2006. Stomach Herniation from re-section 2007, Been getting kidney stones too! The good news...finding this website.
                Meds: Imuran 200mg daily, asacol, Bentyl, Coelestid, occasional flagyl and cipro, high blood pressure meds, paxil 25 mg, 4/20meq's potassium, synthroid...& try to get alot of laughter in.
                         


Mr. Denial
New Member


Date Joined Jul 2009
Total Posts : 17
   Posted 9/7/2009 8:44 PM (GMT -7)   
Actually, I have had a colonoscopy which showed my colon to be clear and the barium test which showed my upper to empty although slowly. The last procedure was the capsule/camera which got stuck and put me back in the hospital. I would have had surgery at the time, but passed the camera after six days and canceled the surgery. Now i'm thinking i should have had the surgeon go ahead.
Prednisone (20mg), Flagyl, Pentasa, Humira, Prilosec . . . hospitalized for two obstructions, no surgery to date, CD in ileium


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/7/2009 9:36 PM (GMT -7)   
It's entirely possible for disease to return, and quickly, after surgery.

Also, you have this disease for life and you don't want to go ripping your innards out without due cause, and end up 45 years later with short bowel syndrome or whatever.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 9/7/2009 9:50 PM (GMT -7)   
30 years of CD. Having those little problems in 30 years is very lucky.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/7/2009 10:13 PM (GMT -7)   

Hey Mr Denial,

In my opinion I think all avenues should be exhausted before undergoing radical surgery, cause once your bowel is removed it cant be put back and as Ivy said crohns can come back anywhere in the digestive tract. I had a right hemicolectomy some years ago and the disease did'nt let up from that moment on it got so bad that I was rushed to hospital at least once every 3 months and really battled for my life. I know have had my entire colon removed and also my rectum removed and am living with an ileostomy. Its a procedure I had no say in really as It was a last resort for me as all drugs failed as well. Living with an ileostomy is obviously better than the alternative but I am still battling with it. So thats why I would say try everything u can first., Take care


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 9/7/2009 10:29 PM (GMT -7)   
I'm having elective surgery in two weeks. I have a stricture at the ileocecal valve, and since it's scar tissue, it ain't gonna get any better. I decided I'd rather have it done when I'm feeling relatively good rather then wait and possibly need an emergency resection. The surgeon doesn't think he'll need to take much out, so at least I'm lucky there. I follow SCD too, and having the surgery will allow me to finally expand my diet beyond soft mushy foods. Right now, I get an obstruction if I eat anything raw.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

Post Edited (spookyhurst) : 9/7/2009 11:32:10 PM (GMT-6)


Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 9/8/2009 4:32 AM (GMT -7)   
I'm in the same spot as you ... i have 2 strictures but do not have large problems with it... when I say large, I mean I'm able to function (walk, do stuff etc), but can't do sports and I'm generally feeling weak and tired all the time (and am loosing apetite). I am not content with the state I'm and am considering surgery. If you are afraid of short colon syndrome I have a suggestion. Ask your surgeon if he can do a stricturoplasty instead of a resection. That way you loose a lot less of you'r colon and I've found a research paper that says that it's a much better procedure with a much lower recurrency rate in the next 5 years (4% instead of 28 % for a resection).
 
here's a link to the paper
the paper is very new (march 2009.) and from Columbia University...
 
so, I have some exams that I need to take care of in the next two weeks and than I plan to go in the hospital for some exams and to see what my options are... hopefully a structuroplasty could do the trick :)

Sofee
Regular Member


Date Joined Sep 2009
Total Posts : 90
   Posted 9/8/2009 6:00 AM (GMT -7)   
wow, just from reading all your replies from this post, you guys have been through a lot! Good on your part for staying strong through it all. Just to add my 2 bits in, I had my colon removed as well in '98 and my life has never been the same. If i could i wouldn't have gone through with it and i would have tried alternative medicine or something, i miss my colon dearly. i have a j pouch inside now but did have a temp ostomy for a year.
i agree, make sure you explore ALL your options! i adv. about 16-20 BM's a day and I have a lot of pain in my rectum - thinking it may be a stricture/absess or fustuila or something... so really if you think the surgery will make your problems go away - well think again - new ones will most likely spring up. CD and UC are very unforgiving diseases, but being you have many yrs behind your belt i can definetely understand your frustration with the meds, it seems to never end!
take care and good luck with whatever path you choose.
 
Sofee
praying for a good night's sleep and a happy bottom!! :o]
1998: Colitis - removal of colon, temp. ostomy 10 mths.
2000-07: disease free & doing well with j pouch.
2007-09: rectal pain & discomfort, loss of bowl control. diagnosed with Crohns March '09 currently on: Emtec, Azathioprine [Imarun] & Remicade. Med History: steroids, predizone, cipro, loperamide [imodium], gravol, previcid, cholestramine, xylocaine jelly, zinc oxide creme, etc.
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 9/8/2009 6:58 AM (GMT -7)   
Mr. Denial--unfortunately, you cannot have surgery and 'be done with it' BUT it can give you a quality of life for a significant period of time. I am a 20+ year sufferer and did have surgery when originally diagnosed at 19/20 years old. I did have a wonderful (well, almost) 10 years after that, but it is true that even when we feel good Crohn's is doing it's thing, so I had many years of struggling at the 10-15 year mark. While I did take the surgery option, I also tried all of the drugs available to me at the time and when they failed, one by one, and there weren't any others to take, I did have a final proctocolectomy. Now, that is drastic, but for the preceding 10 years I did not have small bowel involvement so I felt comfortable having the diseased colon/rectum removed.

I will say that that was the correct decision FOR ME...I had a definitive Crohn's diagnosis and don't mind my permanent ostomy because I have an AMAZING quality of LIFE!

Moral to my story: Take all the information (have your docs do all the necessary tests) and make a decision that you can live with whether it's medication or surgery...just because one person has a difficult time with a procedure or drug doesn't mean your experience will be the same. But at the same time surgery isn't a cure all for Crohn's. Good Luck:)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/8/2009 7:05 AM (GMT -7)   
Hey Mr. Denial:

I too have had this dd for over 30 years. Is it my understanding that you have been med free this past 30 years? I went almost 20 years med free, and it ended with an emergency resection due to complete obstruction. I will suggest that it is easier to have a planned surgery vs the emergency. Yes once they remove that part, it can never be put back, but if your quality of life is suffering then I think I would go for the surgery. If you are nauseous all the time, that generally is a big clue you have a stricture.

I will tell you that if you do go ahead with the surgery, I cannot express this any stronger, GET ON MAINTAINENCE MEDS! Why? Because you are going to have the disease continue to do its damage on a microscopic level. The SCD diet is great to keep the symptoms under control, but it is not enough to stop the disease from doing damage microscopically. Good luck with whatever your decison is.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Mr. Denial
New Member


Date Joined Jul 2009
Total Posts : 17
   Posted 9/8/2009 2:26 PM (GMT -7)   
Thank you all for the thoughtful responses! One thing you've taught me is that there are no definitive answers to this complex and confusing disease. I just got off the phone with my GI and she suggested a consult with a surgeon who has been "standing by" and is familiar with my case. She doesn't disagree that elective surgery might be a viable option. Ultimately, I expect that it will still be up to me to make the final decision so I'll keep reading your posts which offer so much valuable personal experience. Thanks again!

dave
Prednisone (20mg), Flagyl, Pentasa, Humira, Prilosec . . . hospitalized for two obstructions, no surgery to date, CD in ileium


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 9/8/2009 2:45 PM (GMT -7)   
I'm kinda in the same boat as you, I've had 3 obstructions in the last 2 years, and have contemplated asking if they could just cut out the strictures and get it over with. I've since started Remicade and it hasn't helped too much, but I'm only 3 infusions into treatment. I'm thinking about discussing the DBE, but I'm not to that point yet. I don't think they like doing surgery on young people (I'm 23).
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 9/8/2009 5:30 PM (GMT -7)   
Hi Dave (Mr Denial),

I think you need to clarify just what kind of surgery you're talking about. Several posters above seem to have assumed that you're talking about removing the colon, which might not be the case.

I've had 3 bowel resections - all of them improved my quality of life greatly. Unfortunately, scaring of the intestine has been a recurring theme for me, which is why I've had to have 3 surgeries (an average of one every 7 years) to remove an obstruction. All 3 surgeries were at the terminal ileum (the juncture of the large and small intestine). That is the spot that usually causes the most trouble for Crohnies, but that's not the case for everybody.

Small bowel surgery is not such a big deal. It's not fun, but it usually provides considerable relief and few long-term side effects. The small bowel is about 6 meters in length, so if you lose half a meter, you aren't going to notice a big difference. You might lose the ileocecal valve in the process, and that could cause a tendency towards sudden diarrhea, but it's still not a life-changing event - I've lived without my ileocecal valve for many years with no great consequences. I don't have any regrets about my surgeries - the alternative was constant pain and living on a liquid diet, and possibly dying (my last surgery was actually an emergency - complete blockage that wouldn't resolve).

But my understanding is that getting the colon (large bowel) removed can indeed be more than a little inconvenient. Pretty much constant diarrhea, and possibly living with an ileostomy, etc. I'm fortunate that my large intestine hasn't caused me any trouble, and I hope that's the same for you. Anyway, my point is, please clarify the location of the blockage and the proposed surgery if you want more info from us as to the expected result. Of course, most of us aren't doctors, but many of us have had resections and can give you some idea about how it has worked out for us.

best regards,
Robert
Crohn's since 1988
3 resections

Post Edited (ozonehole) : 9/8/2009 6:36:36 PM (GMT-6)


Mr. Denial
New Member


Date Joined Jul 2009
Total Posts : 17
   Posted 9/8/2009 8:21 PM (GMT -7)   
I thought i had made it clear that my colon appears free of any disease to date. As best we can determine, the disease (stricture) is in the terminal ileum. Thanks for the info, Ozonehole. Your experience suggest surgery in the upper bowel might be the way to go. I know there is no sure thing with this medical enigma.
Prednisone (20mg), Flagyl, Pentasa, Humira, Prilosec . . . hospitalized for two obstructions, no surgery to date, CD in ileium


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/8/2009 9:44 PM (GMT -7)   
If your brother were a Crohn's specialist, then he would know that no Crohn's-related surgery can ensure that you would simply "be done with it." It's just not that easy. Even if you have surgery, you will still need maintenance meds...Crohn's can re-appear anywhere, even right after the surgery.   
 
My daughter was sent to ER twice and hospitalized with an obstruction three years ago, and the SBFT and Cat Scan showed a lengthy stricture...it was so tight that her GI could not enter the TI during the colonoscopy. At that time, a Mt. Sinai doc suggested surgery might be the best option. All the GIs during the past three years seemed to have assumed the stricture was permanent scar tissue.
 
They were wrong. A SBFT last Nov showed no stricture. A colonoscopy last March confirmed no stricture. Am very glad we decided to consider surgery as only a "last resort" option.
 
Seems the docs don't yet know just how much of your stricture is or isn't scar tissue. Also, you just started Humira. Why not give the meds a little longer to work?  Flagyl and Pentasa are not that effective, so you have not exhausted the "big guns" of meds available.
 
How long have you been on the SCD?

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 9/9/2009 4:05 PM (GMT -7)   

As you realize each situation is unique and ultimately your decision along with the help of your doctors and surgeon.

I had a colon resection done in May to remove a stricture. I had many tests and medical opinions before deciding.  An internal ultrasound showed the stricture was deep scar tissue and it had developed some irregularities. It had the risk of obstruction and malignancy. And yes no meds are going to get rid of scar tissue.
 
As well, I think our age has something to do with our decisions. It sounds like you have done well to go as long as you have. I only found out two years ago that I have Crohn's and still no normal symptoms so deciding on surgery or medications is not easy. The side effects and risks of the drugs do scare me but then I am not suffering with debilitating symptoms either.
 
The surgery ended up being not that big of a deal for me and was back golfing two months later and eating almost anything now.
 
Good luck, hope you get back sailing and keep us informed!
57 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 9/9/2009 4:39 PM (GMT -7)   
I fully intend to keep all of my intestines for as long as I possibly can. The disease does seem to return, and I've heard of it happening all quite quickly in some. The only way I'd do is if I had NO other option.

As in I've tried everything else, and my quality of life is bad. Or if I don't get it out it could become an emergency situation fast.


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Post Edited (Jen77) : 9/9/2009 7:57:12 PM (GMT-6)


curedcrohns
New Member


Date Joined Sep 2009
Total Posts : 7
   Posted 9/9/2009 8:08 PM (GMT -7)   
I HAVE HAD CROHNS FOR 15 YEARS AND HAVE TAKEN ALL THE MED AND HAVE HAD ALL THE TROUBLES AND BEEN TO ALL THE HOSPITALS AND DOCTORS. I KNOW ITS HORRIBLE BUT I ALSO KNOW THAT SURGUREY IS DEFFINATLEY ONLY A LAST RESORT!!
IF YOU GET YOUR BAD BIT CUT OUT YIT CAN JUST COME BACK IN THE REST OF YOU OTHER BOWEL. CROHNS CAN AFFECT YOU FROM YOUR TROAT TO YOUR COLON.
FIND A CORRECTIVE CHIROPRACTOR, THEY ARE CURING MORE CROHNS PATIENTS LATLEY(WITH A STRICT DIET)THAN AND SURGERY OR MEDICATIONS.
 
PLEASE CONTACT ME IF YOU WANT MORE INFO
 
GOOD LUCK

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 9/9/2009 9:40 PM (GMT -7)   
But if it's scar tissue rather than inflammation, nothing is going to cure it. The only solution is to cut it out, or live on a soft/liquid diet for the rest of your life.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/10/2009 7:48 AM (GMT -7)   
Mr. Denial,
I have a question, have you had a pill camera done? Or the 18 foot endoscope done (not just the regular 3 foot one)? As someone who has crohns in intermitten spots I wonder if you know for sure this is the only place where your disease is at.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 9/10/2009 8:53 AM (GMT -7)   
Not Mr. Denial, but he said he had the pill cam done and it got stuck and landed him in the hospital.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


cp120508
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/10/2009 4:33 PM (GMT -7)   
I am pro-surgery, and agree with your brother.  If you are a good candidate, then you should really consider it.  I had a resection in July 1991, my hospital stay lasted 63 days, fistulas formed, fever, etc., but would do it all over again. Honestly can say I have lived a realitively pain free life since. I go for my colonoscopies every two years as instructed.  I have had some flareups over the years, but havent been on any medications since the surgery.  This year i have had 4 flareups, and went to see my doc to find out what is going on.  He thought i could have some scar tissue/narrowing wall where my surgery was (small intestine, 2 feet removed), i went for a cat scan last week, it is normal. He gave me Lialda to try, not sure I really want to go on meds again, as i deal with the pain when it comes. Back to you...its a big decision, good luck.  
New Topic Post Reply Printable Version
36 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Tuesday, December 06, 2016 7:11 AM (GMT -7)
There are a total of 2,733,449 posts in 301,122 threads.
View Active Threads


Who's Online
This forum has 151259 registered members. Please welcome our newest member, dolly23.
294 Guest(s), 9 Registered Member(s) are currently online.  Details
Cigafred, Hol1979, Stanislav, pmm73, ks1905, psbg, Traveler, trumpet123, fiddlecanoe


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer