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Positive stories of surgery and any advice?

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Crohn's Disease
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Posted 10/6/2008 9:03 PM (GMT -5)
hello

My husband was diagnosed with crohn's last month. He was put on 60mg of prednisone. He feels better but still has some cramping and fatigue. But not like it was before the pred. He had a colonoscopy last week and the inflamation hadn't gotten any better after being on the prednisone for about a month. So they are now telling us he needs surgery. they are recommending removing the entire colon to reduce the liklihood of complications and future surgeries.

I'm so scared. He's angry and depressed but handling things well so far and I am just so nervous. We are young and want to have a family soon. I want to live a normal life with him and I want him to be happy and not in any pain. Surgery stories on here scare me. Does anyone have any posiive stories about a surgery like this? Where they remove so much so soon? Does it seem strange that he hasn't tried any other meds yet and they already want to do surgery? Will we still be able to try for a baby next year? Will he be okay?

Thank you for your help! I've never posted on a forum before but I'm feeling very lost. I want to fix everything but I'm powerless. I'm not looking for sympathy, as I know I am he lucky one but I am turning here for hope that things will be okay and any advice. Not looking for horror stories. I've read those already. I need hope.

Thank you in advance
Posted 10/6/2008 9:11 PM (GMT -5)
I've had a resection, nothing compared to your hubby, but it was wonderful to feel well again. The active disease really takes a toll on you physically. My doc told me before surgery "you won't believe how awful you feel now until you find out how good you feel later" and he was right. I know someone personally who had his entire colon removed about 20 years ago. I don't know the reason, I don't think it was crohn's, maybe UC, but he has never had a problem since. I know this doesn't help much, but just wanted you to know that there are plenty of people out there that had no problems with surgery and would do it again if necessary without hesitation. I know not everyone is so lucky, but I think the good outcomes happen more than the bad ones. Good luck and your husband is a lucky guy to have a supportive wife, I can't imagine my hubby getting on here to ask questions about me!!
Posted 10/6/2008 9:21 PM (GMT -5)
hi darling, I am so sorry you are going thru this. the first few months are scary and confusing. you are in a good place with kind people. Before any surgery as major as that, I would get a second or third opinion. it could be necessary, but make sure, as once it is done it is done. there are folks here at all levels of illness, and some of us find meds or dietary changes that return us to normal, so don't feel that you have to rush, get info and take care. yp
Posted 10/6/2008 9:58 PM (GMT -5)
So sorry you and your hubby are going thru this.

Definitely get second and third opinions!

Everyone's experience is different, but I have never been able to be maintained solely on prednisone, usually it only stabilizes me in conjunction with another med.

I have had Crohn's-colitis for a relatively short time compared to many folks in this forum, only 2 and a half years, and I am headed for removal of my colon later this week after exhausting a long list of medications that failed for me. A lot of these meds work well for lots of people, and personally, I thought that Humira was my wonderdrug -- I was so disappointed when it stopped working for me. I am a bit surprised that no other meds than prednisone have been suggested for your husband. I think some physicians are also more surgery-minded than others, and you may just need to find one with a different style of treatment.

Having surgery can be a tough decision. I am ready for it, as I am ready to have my life back, fingers crossed.

Best wishes, and welcome!
Posted 10/6/2008 11:01 PM (GMT -5)
pibbin I wish you the best of luck. If you are up for it, please let me know how it goes. Also yogaprof and kimberlayn, I really appreciate your thoughts and kind words. The thought of seeing more docs for more opinions seems exhausting but this is a huge decision. It is hard because my husband is easily discouraged and frustrated so he gives in easily. Hence why I am on here :) he doesn't want to research it because it scares him and I think he thinks that knowledge won't make it go away so he doesn't want to know. Uhg. I don't know. You are all very strong and inspirational. I know we can get through this. The surgery is so scary, but whether we go through with it or not we'll keep moving forward. If all of you can make it through this, I am confident we can too :) if anyone has more positive surgery stories or advice about getting through this and the liklihood we will be able to move on with our lives and start a family, please share.

Thanks again. It is so comforting to share with people who understand and hear your experiences
Posted 10/7/2008 11:30 AM (GMT -5)
I know that each doc appt, test, med, etc takes a lot out of one, and that is why the first months are difficult. However, it pretty much has to be done, so try to enjoy life as much as possible and move through the bad stuff. please keep talking to us and if he is ever willing, there are many fabulous men on here who would help him, I am sure. yp
Posted 10/7/2008 11:44 AM (GMT -5)
emrose--welcome to the forum. Sorry to hear your husband is having such a difficult time. You are more important to him, right now, than either of you know. I have lived with Crohn's for more than 20 years and wouldn't have made it without my husband...he has been WONDERFUL:)

As far as a TC goes, I had a proctocolectomy done in Feb '08, and it was my best decision ever...I wish I had done it sooner. There are many other people who post on the ostomies board that have similar results. You may want to check out some of those posts (it is not just about ostomies but TC's and J-pouches, too).

I would definately get as many opinions as needed until you and your husband are comfortable with the outcome. I would also find a specialist and maybe one at a teaching hospital...
Posted 10/7/2008 4:32 PM (GMT -5)
Removing the colon is a last-resort in Crohn's, as the disease will often just return in another area.

Your husband is FAR from being at this last-resort stage. Steroids are but one of MANY different medical treatments that should be tried before removing the colon. Has he tried Remicade? Humira? Cimzia?

I strongly encourage you to seek a second opinion. Removing his colon very well could help, but once it's gone, it's gone. So he should try every med possible before having it removed. And it sounds like that hasn't been done at all.
Posted 10/7/2008 8:22 PM (GMT -5)
Thanks again everyone.

I want to expand on a few things:

1. The surgeon just looked at his tests and believes she can connect his small intestine to his rectum so that seems like a positive thing. It means no bag, but 6 - 8 bowel movements a day

2. Apparently she always recommends removing the entire large intestine in crohns patients because the colon is often weak and doesn't always connect well after a smaller resection. Also, it reduces the chance of another surgery since he crohns does come back. However, I am concerned about it attacking is small intestine

3. Surgery is being recommended because of a stricture. In 2 coloniscopies the scope hasn't been able to get past 30 cm due to narrowing. He has been on prednisone for 6 - 8 wks but no other drugs.

Uhg. Such an importAnt decision and so many variables!!

0hio- your story was nice to here and reassuring that sugery can be a be a very positive thing. Yet beave, I totally get your point and am concerned we haven't tried enough options.

Yogsprof - I appreciated your comment because you are right - it just has to get done. It's exhausting but your comment about the first couple months being hard reminded me that just because we are in panic mode right now doesn't mean we will ALWAYS be. Again, it all comes back to quality of life. I love him so much and hate to see him go through his. We've done a lot and worked hard to be where we are at in life and were just about to try for a baby. What a curve ball!!

It means a lot to me that you have taken the timeto respond. Thank you again
Posted 10/7/2008 8:40 PM (GMT -5)
Can they tell from colonoscopy whether the stricture is from scar tissue or from active inflammation?  If it is from scar tissue, surgery is probably the proper thing to do.  If it's active disease that's causing the stricture, there's still a chance another medication besides prednisone will help it.

But I'm still baffled by the surgeon's comment that she prefers to go ahead and remove the entire colon.  I can't really comment authoritatively on that without knowing more detail about the health of the rest of his colon.  But in general, removing the entire colon because of a stricture in one area is NOT normal practice and I would question that surgeon's approach to dealing with Crohn's.  Now if the colon is all in really bad shape and not responding to ANY medication (not just prednisone), then there are definitely cases where removing the colon is appropriate.

But in general the philosophy is to remove only what is necessary; no more, no less.  The trick of course is determining what is necessary to remove and what isn't.  So it depends in large part on what kind of shape the rest of his colon is in.  If it's in bad shape but responds to something like Remicade, he probably would only need a resection, not a complete removal.

You are correct that it is possible that Crohn's could come back in his small intestine, or even in the rectal area, so removing his colon may or may not be the end of Crohn's disease for him.  More often than not, it eventually comes back somewhere else.

I'm sure this is all a bit overwhelming, and contacting another doctor for a second opinion might just confuse things even more, but I would absolutely get a second opinion and give other meds a chance to save at least part of his colon.  Something like Remicade might help enough that he would just need a smaller resection of his colon and not total removal of it.  I think it's worth a try.

 

Posted 10/7/2008 8:52 PM (GMT -5)
I agree with the above especially beave, absolutely get second and third opinions! Surgery is usually the last resort.
Posted 10/7/2008 9:03 PM (GMT -5)
The GI doc definitely thinks its scar tissue, which is probably why he referred us to the surgeon. However, I believe the only reason he thinks its scar tissue is because it didn't go away after the prednisone. I will call him and ask about that. He's on vacation until Friday, so I'll have to call on Monday. My husband is scheduled for an extra fancy cat scan on Friday so we can get a better idea if the crohns is affecting him anywhere else. Its starting to hurt a little when he urinates, and that seems like only bad news. They will be doing a urine sample and some bloodwork tomorrow. When we were referred to the surgeon it didnt seem like our GI doc thought the entire colon needed to be removed so I'll definitely be running that by him as well! But, part of me thinks if they just remove the whole thing, we might be able to get him on some meds and reduce the likelihood of more surgery - because avoiding that would be ideal. Oh - By the way - it seems the doc is open to other meds AFTER surgery so I need to see why not before?? Probably because he thinks its scar tissue... but I need to look into that more.

Thanks!!!!
Posted 10/7/2008 11:25 PM (GMT -5)
what is the scar tissue from?
he might have a UT infection. I had several when I was first sick. who knows why! :)
Posted 10/7/2008 11:51 PM (GMT -5)
I would seek a second opinion just to make sure. I have had 2 surgeries and they were at the same resection site. I would be very hesitant to have them remove my entire colon as a preventative measure. So much has been found to help keep this disease in symptomatic remission to be so aggressive right off the bat. Anyways that is my 2 cents worth.
Posted 10/8/2008 11:05 AM (GMT -5)

Hi,

I'll tell you my story and I hope it helps.  I had a pseudo-polyp mass in my transverse colon after having crohns for 20 years.  I'm 41 now.  I had my surgery on 10/3/08 and spent 4 nights in the hospital.  My health and strength were very good going in so I'm sure that helped with my speedy recovery.  I was scared about the surgery, but I picked a surgeon that I had total confidence in.   I knew I could come out with anything from a colon resection to total colectomy with a bag.  I knew my surgeon had the experience to do the right thing.

When I woke up after the surgery, I had extreme pain.  That is something you may want to discuss.  Maybe they can get the morphine in sooner!  Once the pain subsided and I found out I did not have a bag, I was so elated.  I had an extended right Hemicolectomy.  They removed my right colon and part of my transverse.  The next day after surgery, I was feeling pretty good.  I got out of bed for a walk.  I had such a positive feeling because the surgery went well.  I had read the recent studies about gum chewing and brought my own to the hospital.  I started the morning after surgery.  It felt good to have that flavor in my mouth - that helped my sprits too.  I passed gas after about 65 hours (morning of 10/6), and according to my research, is pretty fast.  After that, the hospital started me on a clear liquid diet for breakfast and lunch.  I had a soft regular dinner.

On my 4th day, the doc's said I could be released.  I had a regular breakfast with no problems.  I was home later that day.

Here I am at home now on the 5th day and I feel great.  Yes, there is some discomfort from the incision, but it's not so bad.  Especially with the pain killers.

Let me know if you have any questions.

Posted 10/8/2008 2:59 PM (GMT -5)

Thanks for your story HJ. It is so great that your recovery is going well! I really hope my husband has a similar experience, no matter what we do! Part of your story made me realize that I do not know enough! I mean, you had a hemicolectomy.... and I've never heard of that specifically. I don't totally understand what you mean about right colon or transverse. I am baffled that there are so many different types of surgeries and all I know is that they want to remove his entire large intestine! I mean, that is all I know.... other than that I know they can do a resection surgery.

I have done some more research and it seems that most resection surgeries are done in the small intestine? However, we know that he has a stricture in his large intestine. Do you think thats why they want to remove the entire thing? I believe there is some "friability" going on so maybe they think it is too weak to reconnect. However, I feel pretty strongly that they don't have enough information about the strength of his colon and/or the prevelance of the desease in him to make that decision.

My instinct tells me that he does need surgery, since we are probably dealing with scar tissue... but the idea of removing the entire lrg intestine so soon, without even trying other meds seems over the top still. Oh, and in regards to the question about where the scar tissue is from, I would assume the active desease was just there so long without treatment that it built up? But, I don't totally know.

I want to thank all of you! Because of your responses we are seeking a second opinion. We probably wouldnt have done that otherwise. MY husband finally agreed that it was necessary to go through the process of talking to another doc. I am glad he is not apathetic anymore... just angry... which is at least a good sign that he moving forward in the greiving process. So.... again... THANK YOU.

Oh, by the way, yogaprof - I do wonder if it is a UT infection. It seems like that is fairly common among crohn's patients.  He is having his urine tested on Friday when he gets a CT scan. I just hope and pray there is not a fistula impacting his bladder. Fingers (and toes) crossed!!

Thanks again, and I look forward to more advice and support on this forum.

Posted 10/8/2008 3:52 PM (GMT -5)

In medical-speak, any word with -ectomy on the end usually means "surgical removal of."

So a "colectomy" would be surgical removal of the colon.

"Hemicolectomy" would be surgical removal of half (hemi, like hemisphere) of the colon.

If you look at anatomy, the colon comes from the small intestine on the right side, goes up, then across the belly right to left, then down the left side.  The right side that goes up is the ascending colon.  The part that goes right to left is the tranverse colon.  The part that goes down the left side is the descending colon.  Then it meets the sigmoid colon, then the rectum, then the anus, and out.

Friability is another medical term used often in endoscopy when the tissue is brittle, or it breaks apart easily when touched.  Healthy colon tissue, like skin, should stay intact when poked, but friable colon tissue will break apart when poked.  Think of wet tissue paper, or, conversely, really dry, arid soil that's all cracked.

Friability usually responds to prednisone, and it also often responds very well to Remicade/Humira/etc.  Friability could be a reason why the surgeon would be hesitant to try a resection (because it is possible it would be too weak to hold the resection), but again, this is where meds could help before the surgery is undertaken.

Patients can and often are put on Remicade or Humira *before* having surgery, and it's generally considered safe to be on one of them while having surgery.  It's possible that one of those meds could heal up the remainder of his colon so that it could take a resection successfully.

As for resections, they can be either in the colon or the small intestine.  Probably the end of the small intestine is the most common site, but the colon is common as well.

And, yes, the stricture of scar tissue usually comes from active disease scarring areas over time.  In some people that process takes decades.  In others it takes just months.

It sounds like you and your husband are learning quickly how to deal with this and I commend you both for that.  Good luck with the second opinion.

Posted 10/8/2008 4:12 PM (GMT -5)

Beave - thank you!! This was SO helpful! I like the option of trying Remicade or Humira and then possibly a small resection. I will be much more educated before the second opinion, so they will have to answer all my specific questions rather than just tell me what they want to do :)

First is the CT scan to make sure we know where he is affected by the crohn's since they have only gotten so far with the colonoscopy.

Thank you again!!!

Posted 10/8/2008 4:52 PM (GMT -5)
Check out this list:

http://www.usnews.com/directories/hospitals/index_html/specialty+IHQGAST/

This is a list of the Best Hospitals for Gastrointestinal Disorders

I am lucky enough to live near #7 on the list.  Hopfully you live near a hospital high on the list.  That is where I would look for a surgeon.  They will have the expenience to have seen a case like your husband's many times.  That will give you the confidence that they can and will do the right thing!

Also, I am on Humira.  I think it worked for me at first, but the last shot before surgery did not seem to help.  I stopped it before surgery.  Humira is a painful shot every two weeks, but over in 10 seconds - no big deal.

Good luck!

 

Posted 10/8/2008 7:28 PM (GMT -5)

THanks Hj! I have not found my hometown in the list yet, but I am about 3 hours from #20.... Not ideal... but, this is a great list to have!

Humira sounds interesting. If it would increase the liklihood that only a small resection would be needed, I'm all for it. I guess we'll have to see what some other docs say.

Thanks again!

Posted 10/8/2008 8:04 PM (GMT -5)
my first colonscopy showed friabilitly and 15 cm of ulcers; three months later after pred it was completely gone. I had problems due to adhesions from previous surgeries, but have never had more signs of crohns. go for meds for awhile--you can always have surgery, but it has so many side effects, even minor surgery.
you are doing great. he is so lucky to have you.
Posted 10/9/2008 1:05 AM (GMT -5)
thanks yogaprof. I told my husband I was on here "talking" to you all and that you said I was such a great wife! He reluctantly agreed :) (we joke around a lot. I know he appreciates my support) I will let you all know what the CT scan shows next week and if we talk to another doc. We Also need to check in with his regular GI doc and tell him what the surgeon said because I don't even think he thought she'd suggest removing the entire colon. I'd love if you could give more advice as we go through this process and learn more about what we are dealing with. If I keep updating you guys, and getting advice I will probably feel much better about our final decision.
Posted 10/9/2008 9:56 PM (GMT -5)
My first surgery was because my small intenstine had inflammed to the point it had closed off, tied itself into a knot loosing blood flow, becoming gangenous, and then rupturing. The surgeon told me they used the biggest staple made to reconnect the bowel because it was so inflammed. In fact, she told me that if I would have been 10 hours later getting to the hospital, I would not be here now. I would not let them remove the entire colon without a second opinion. There are many unitended consequences from surgery to go and remove any more bowel than necessary. One is short bowel syndrome, which I deal with after 3' of small intestine being removed by 2 surgeries. Get all the information you can before making your decision. It really altered my lifestyle. Good luck and I hope you find the answers you are looking for.
Posted 10/9/2008 11:38 PM (GMT -5)
emrose and everyone else with chrones disease or any other disease for that matter...i have hope...im 23 and i've had chrones for 3 years now...i live in maine and i've seen every gastro guy in the northeast...i had about 3-4 fee of my large intestine removed and i know have an ileostomy...in high school I was an all state basketball and golfer.  I had a scholarship to go to a school in boston but chrones happened. I had to drop out of college and i drove a couch for 3 years.  At one point i was six foot one and weighed 95 pounds.  When i went in for my iliostomy i was on 56 pills a day. 56. Prednisone, folic acid, remicade, 6mp, mountains of pentasa, prevacid, and oxycodone for the pain.  I had to get iron infusions every other day.  My arms looked like darts boards from all the needles.  The disease nearly cost me my life i was so sick.  I come from a strong family so it was really hard on them.  I have an ileostamy now and i get it removed in two months.  Im uncontrollably excited.  From my experience I've gained a lot of knowledge.  Im sorry but the drugs just are not going to help any of you.  They may help the pain and give you consistant health for a while but its like chopping off your arm and putting a band-aid on it.  These drugs they suppress the symptoms.  You have symptoms because your body is trying to tell you that something is wrong.  Some poeple have had good luck with the drugs...the majority you will find start with the basic drug until your up to the big dogs...ie remicade, humira...I've tried many unconventional methods to help give me consistant health again.  Acupuncture is good.  Give that a shot.  Do a little research find a good acumpuncurest.  Next.  I found this guy...his name is russell mariani..hes this guy who had ulcerative colitis/chrones.  His methods not only touch chrones or colitis...he helps with a multitude of diseases.  If it wasnt for this guy I would have died on the operating table....no doubt. He is unbelievablly thorough and hes been there so he knows.  please please please just call him and here what he has to say.  Tell him a kid from maine with the last name flaherty sent you.  He'll laugh.  This is his website http://www.healingdigestiveillness.com/

Another thing everyone of you has to do is go to http://www.reliv.com/

I also started taking this product called reliv.  This product is a powder and has completely changed my life.  Chrones was marching through my body 3 years ago, and fast.  Since i've been on reliv my chrones STOPPED IN ITS TRACKS...i had an endoscopy 2 months after i started reliv and they couldnt find any chrones in my body...The doctors were completely stunned...there a a load of poeple that i know personally that are taking this product and seeings un-imaginable results...im slated to have my ileostomy reversed in two months.  Im star on my colleges golf team...just made deans list and i feel like i can move MOUNTAINS.  I eat whatever i want....except popcorn and too much corn...and i was on a low residue diet for 2 years...im talkin nothing but cooked vegetables and plain meats for 2 years!...I am symptom free...completely....i am on no medication at all...zero pills...my friends there is hope...the idea behind what my guy russell says if you call him and this reliv shake is that the body is a miracle.  The body can heal itself it really can...you just have to give it the right fuel.  I beg you...check out these sites and talk with russell and order the reliv...it will give you everything your disease has taken from you back.  God bless you all.

Post Edited (flaherty12) : 10/9/2008 11:50:52 PM (GMT-6)

Posted 10/10/2008 12:27 AM (GMT -5)
my last post was long but i cant resist...quick story...i go in to this acupuncturist (i cant spell)...im 6'1 and this little chinese women comes into the room...she may have came up to my belt buckel...she came in with a bag of rocks..yes rocks...she tells me she has to identify what is upsetting my digestive tract...i hold the vitamin c rock...she says make a fist as hard as you can...she takes her little hand and tries to open my fist...my knuckles are white im squeezing so hard and she couldnt open my hand obviously...next she gives me the wheat rock...same deal...cant open my hand...at this point im looking at her like shes crazy...next i hold the white sugar rock...i make a fist as hard as i can...mind you i was weak at the time but i got big irish hands...knuckles are white...she takes her little hand and one by one peels my fingers back and opens my fist...she had to call in an assistant to pick up my jaw off the floor...i had a weekness to white sugar...she changed my diet and I saw immediate improvement days later...also hydration is key...get off the coffee, soda, and crap drinks...invest in a home water filter...bottled water is expensive...this home water filter is absolutely key...in the morning i do whats called the water cure...as soon as you wake up start drinking water...drink as much as you can every morning until you can drink 32 ounces of water in the first hour you wake up and sip water all day...this may take a weak or two...stick to it im telling you...also go down to your local whole foods grocer and get celtic sea salt...sprinkle celtic sea salt in your water...this essentially makes a home i.v. and will help you immensly...as far as food goes you gotta eat whole foods...organic chicken, steaks, vegetables whatever you eat.  White bread in your house has got to go...GOT TO GO...it is like poisen...i love white bread but i just couldnt eat it anymore when i researched whats actually in it...get wheat bread or also sourdough which is very good for you...sleep is key as well...a good nights sleep is essentiall to your healing...also...turn the freaking news off and all the negative things that invade your life that don't need to...watching those stories of our troops dieing in iraq or a little girl getting abducted are not going to help you...sub coinciously they mess with your chi and have adverse affects on you...you gotta keep un-neccesary negatives out of your life...also once a day i eat a little bowl of whole grain porridge...yes it sounds nasty...you gotta do it...go to the whole grocer and get whole grain oats...not the steel cut with just the shell...you need the whole oat...cook it at a low temp on the stove in water...i add all natural mapel syrup to it in the morning...this stuff is like liquid health...is pulls all the junk out of your body and will help you IMMENSLEY...whole grain oats...im serious about all of this...my family was just like most of you...trusting whatever the doctors say...we didnt know about this stuff just like some of you....its scary stuff...double even triple up on any move you make...second and third opinions are vital...what im saying is stick close with your doctors yes but dont buy everything they say...doctors give you drugs and they cut...thats all they know...attack your disease from many angles...stay close to your docs but try some of the things im telling you...especially russell and the reliv (last post)...like i said I almost lost my life to this fight...when I went into surgery they found my appendix had exploded 2 weeks before...by all means it should have killed me...i was on so many pain killers i couldnt feel it happen...in college i would have to get up at least twice a class and throw up...day in and day out...I just figured this was my life from now on...this thing took my 3 years of my life...now i got a body like a mazerotti, i dominate school, got a good job with AAA, i date a freakin model, and my face hurts at the end of the day because I smile so much...you can do this...god bless
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