Some very important (to me at least) questions

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hspenser
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Date Joined Dec 2005
Total Posts : 544
   Posted 5/13/2010 4:33 PM (GMT -7)   
Over the past couple of years I have found the people on here to be pretty good with advice and insightful...so I need your input on these items.... feel free to comment on any portion and IMO there is no right or wrong answer just opinions...which is what I am looking for.
Thank you in advance


Advantages or disadvantages of a colostomy versus an ileostomy.... let us assume that both will work...surgeon suggests ileo because it lessesn chance of future issues with large colon.

What should I look forward to with either....meaning how will (other than my health) my diet, sleep, life itself change or be affected?

What happens when you run out of small bowel...?

Do you go with one of the best surgeons Dr. S. Wexner, Cleveland Clinic) around for the colostomy/ileostomy who is 5 hours from your home even if you have good and well qualified surgeon in your area? Point being I would be in a hospital away from my support base (wife would of course be by my side, but the rest of family would not) Costs are not a consideration.
Tested BIOGEN TYSABRI (gave me 2 years of remission)
Naltrexone Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Tried Humira for over a year no help....been on Cimzia since April 2009 very little change

Crohns is currently active and has been since April of 2005

Just started back on Prednisone 50mg and now 6MP (150 mg) started as of Jan 2010

53 yrs old


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/13/2010 4:38 PM (GMT -7)   
I would go with the best surgeon.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3110
   Posted 5/13/2010 6:08 PM (GMT -7)   
hspenser~where is your Crohn's affecting you? Rectum? Will the surgery be permanent or a temporary 'rest' of the bowel?

I had a very diseased Rectum with more fistulas than I cared to have mad and had a temporary ileo for 8 years before going permanent in 2008. My experience is with Ileostomies but on the Ostomies Forum there are Crohnies with Colostomies. I'd suggest checking in out over there (you can use quick jump) it's not always super active so it may take a day or two to get answers to specific questions.

With a Colostomy there is more time for the body to absorb fluids so the output is a little thicker. And Ileostomy tends to be thinner and is active for most of the 24 hours in a day!! That being said, I only empty about 4-6 times a day, and don't usually make extra trips since I am already going to pee.

I sleep through the night (some get up to empty) and have an output somewhere between applesauce and oatmeal that I control with my diet. I do eat a high fiber diet an have no issue tolerating it. Some don't eat as much fiber as I do and they supplement with something like Metamucil and Imodium to bulk up and/or slow down.

Your activity should increase since you'll feel better (after recovery, of course) and I do many sports without any problems (biking, kayaking, horseback riding and swimming are a few)

Like Navy said, choose the BEST ColoRectal Surgeon, it will make a huge difference!!! Placement of the stoma, construction of the stoma, Ostomy Care Nurses ALL make the experience easier. CC has wonderful WOC Nurses who will teach you how to care for your stoma and set you up with all the correct appliances. They help with questions later down the road, too, if any come up. I had my surgeries at the CC in Cleveland and cannot say enough about my care (I asked family/friends ~hubby was there ~ not to come visit since I needed to recover, not entertain, so that shouldn't be a too hard...you can have the support after you get home allowing your wife some rest or personal time).

You'll always have opinions that vary, but if you are comfortable with the doctor and do your research, you'll be okay!!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Post Edited (OHIO76) : 5/13/2010 7:11:02 PM (GMT-6)


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/13/2010 6:35 PM (GMT -7)   
I had an ileostomy for 4 years (wish I'd not got rid of it, actually). With that I got my first remission in 15 years. I got it due to sepsis after a resection surgery, so I had not time to think about. It was, until the moment of decision, my biggest fear and it turned out to be a life savor and my first reaction to seeing the stoma was "Cooool" cuz it is; that some one figured out how to allow some one to live this way, totally freaking cool!

I found most of my empties were very liquidy, so in summer I had to drink lots of OJ and eat bannana's to keep my potasium up, but that was easily done. I ate pretty much everything though I found water melon was a guaranteed blow off. I even ate salads though it gave me some chunks to my discharge.

Immodium did nothing for me slowing it down.

A couple of tricks, Since I hated getting up to empty in the middle of the night I rarely ate past 7:30 pm ( and if I did I knew I'd be doing a middle of the night run).

I always did my changes in the morning before breakfast. I found my output was almost nill at this time and could do a change in 20-30 minutes once a week. Of course if I got a blow off, ie: the flange came off, I'd have to do it when it needed to be done. There were times when I'd have a blow off in my sleep (watermelon and a pasta primvera - never ate that again, too many veg at once), if it wasn't too bad, I'd wrap a blue pad around me and go back to sleep and do my change then. Otherwise I was up dealing with it.

Even with a fistula on my stoma, and contents draining on my skin a bit ( I had to custom cut my flange) I got so I did one change a week and my skin was mint.

Of course I had accidents, the clip would slip off, ewe, and the blow offs, but these were infrequent.

I always traveled with a ziplock containing a change ready to go.

I used Opsite (expensive, but handy) I cut myself a template looking like an arched road bridge so that I could place it around the flange tape (and over) and I swam fine.

I was physically very active, including sex, and it was not a biggie. I wore boys swim trunks and they hid the pouch.

For odour the only option is M9, it's scentless and for the first time in my life my poop didn't stink. Great stuff, especailly when you eat garlic and chicken, etc...

Here's the thing, if you have CD higher up it may not help that, necessarily. But I had skip lesions including duodenal CD and all of it calmed down with the pouch, they cut out many of the CD lesions but not the Duodenum.

Check out the ostomates and google Shaz's Ostomy lounge, that one's been around since forever.

Ok, the only thing I had to think about where long trips, bathrooms matter for those and movies. I never ate before going to a movie theater, or any theater, but other than that I really didn't have to adjust much.

Oh and no more hot baths or hot tubs, too hot for the stoma, showers are ok, and swimming as I said was fine.

I'd go with the very best doctor, always a good idea and you won't be in hosp for long.

Best wishes, you really will be able to eat more of what you love eventually, realllly :)!
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.

Post Edited (MToronto2) : 5/13/2010 9:39:59 PM (GMT-6)


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 5/13/2010 8:16 PM (GMT -7)   
Ohio... issues in the small bowle as well as some major problems with the sigmoid, anal and rectal areas...the surgeon wants to do the ileo and my gastro feels we should follow his advice.

MToronto...what is opsite and what is M9?

Thank you all for your comments.
Tested BIOGEN TYSABRI (gave me 2 years of remission)
Naltrexone Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Tried Humira for over a year no help....been on Cimzia since April 2009 very little change

Crohns is currently active and has been since April of 2005

Just started back on Prednisone 50mg and now 6MP (150 mg) started as of Jan 2010

53 yrs old


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/13/2010 8:38 PM (GMT -7)   
I'd go with the surgeon's advice. I think your life is about to change for the better, I really do.

Opsite is a clear tap, in a roll, that you can keep things dry with. Cool stuff.

M9 is a pouch deodorizer, it had no scent itself (there's one that smells like lemon, and all I can say is gross). You poop will no longer stink.

Oh on more thing, since we still pass gass, they tell you to minimize gassy foods. To some degree I did, but I also learned to go to the can and simply empty the air, and I figured out how to do it in be (I slept alone at the time) without spillage. Anyway, they will tell you to avoid carbonated beverages, no biggie for me, I hate pop (soda) but I like beer. Cuz of the CD beer was the first thing to go, but I found I could drink it again after my surgery.

Here's what I did. 1) I only got the good imported beer, Belgian is my fav. 2) I ordered a 1/2 pint in a pint glass (Good news here is I usually got more than a half pint) and a spoon. I stirred the crap out of it and got rid of the bubble and enjoyyyyyyyyyyyyyyyyyyyyed it very much!

Sigh, not drinking again. Oh well, I never liked being drunk anyway.

Please let us know how things go for you, and visit even when you feeling like a staaaahh, ok maybe a minor celebrity.

Good thoughts to you and yours.
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 5/14/2010 1:45 AM (GMT -7)   
Thanks M....
Tested BIOGEN TYSABRI (gave me 2 years of remission)
Naltrexone Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Tried Humira for over a year no help....been on Cimzia since April 2009 very little change

Crohns is currently active and has been since April of 2005

Just started back on Prednisone 50mg and now 6MP (150 mg) started as of Jan 2010

53 yrs old


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 5/14/2010 3:50 AM (GMT -7)   
hspenser~I did have early small bowel, too, and (knock on wood) that has not been an issue:)

Just how we are different on how Crohn's affects us, it is the same with ostomies, since I don't have a problem with eating late or drinking beer without removing the fizzies :-) and I LOVE beersmilewinkgrin It is trial and error once your are eating real food again!!

There are filters that allow the gas to escape...they are charchol lined (no smell) and they keep the ostomy pouch flat to your stomach smilewinkgrin There is also a product called Sure Seal that keeps the wafer dry and there are even folks who hot tub...but I'm not one of them!

It sounds like it will be a Proctocolectomy (removal of Colon, Rectum and Anus)? It is not a small surgery, but so worth it, and if it can be laparoscopic recovery will be easier (but whether it is open/lapro isn't as important as having an expert perform the surgery!).

If you are interested, in talking/meeting a 'real live person' with an ostomy, ask your doc if there are any volunteers you could meet! It might help with the final decision to do/not do the surgery...good luck I'll be thinking of you.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 5/14/2010 4:30 AM (GMT -7)   
Ohio... yes it will be permanent and it will be as you describe...at least that is the plan as of now. The surgeon mentioned that he could do it laparoscopicly but that he felt with me he needed to "get his hands in there". I think he is concerned with what he find in the small colon.
I am a foodie so I am concerned about how this will affect my diet more than almost anything else. Sure, i am concerned about giving up parts of my body.... but that is a mind over matter thing IMO.

I was up and about with in a week with my resection ...and back to work with in 10 days of the surgery...I am thinking this time it may take the full 2 weeks... I spoke with my reg gastro last night and he feels that if Dr. Wexner thinks the ileo is the way to go then that is what we do...I may try to hold off for a while since I seem to be doing better.

good comments thank you.
Tested BIOGEN TYSABRI (gave me 2 years of remission)
Naltrexone Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Tried Humira for over a year no help....been on Cimzia since April 2009 very little change

Crohns is currently active and has been since April of 2005

Just started back on Prednisone 50mg and now 6MP (150 mg) started as of Jan 2010

53 yrs old


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 7/30/2010 11:49 AM (GMT -7)   
Hspenser, how are you doing?
33 y/o male. Dx'ed in 1999. No surgeries.

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

Reduced gluten and dairy.


Go Saskatchewan Roughriders!


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 7/30/2010 2:29 PM (GMT -7)   
Doing okay thanks. Good and bad days followed by great and worse than death....The docs have ruled out the colostomy and say I will have to have an ilio....BUT, we are doing what we can medically first. I know I have a stricture also. Moving off Cimzia and back onto Tysybri possibly as soon as next month.

Just trying to avoid surgery.....very little good about moving to a permanent bag.
Tested BIOGEN TYSABRI (gave me 2 years of remission)
Naltrexone Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Tried Humira for over a year no help....been on Cimzia since April 2009 very little change

Crohns is currently active and has been since April of 2005

Just started back on Prednisone 50mg and now 6MP (150 mg) started as of Jan 2010

53 yrs old

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 7/30/2010 3:18 PM (GMT -7)   
Hi there, hspenser... Sorry to hear things are not working so well. I thought you tried Tysabri a couple of years ago when I first did. Or, have you not been on it since the trial? I've also failed Cimzia, Humira and mtx and am facing a potential ileo. They want to do permanent, but I'm still nervous. It's good to read everyone's responses. I just wanted to send good wishes...
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09
Failed every other drug and about to prepare for ostomy surgery... In the process of gathering info and meeting with ET nurses.

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 7/30/2010 8:45 PM (GMT -7)   
sr5599,,,thanks and cheers to you.  I was kicked off thr Tysabri when the folks started dying....mostly MS patients.
 
I did so well on it that I didn't care how many died...I was willingh to still take it....but they said no.
 
Now Dr. Valentine in Gainesville said yes....so we start over.....hope it works this time.  Not so sure I will last with a bag.  I have involvment with both the large and small colon...so when the do take stuff out ...it will most likely be the entire large bowel....close off the rectum....and remove three or four foot of small and hook up an ilio bag.   Where is kevorkian when you want him
Tested BIOGEN TYSABRI (gave me 2 years of remission)
Naltrexone Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Tried Humira for over a year no help....been on Cimzia since April 2009 very little change

Crohns is currently active and has been since April of 2005

Just started back on Prednisone 50mg and now 6MP (150 mg) started as of Jan 2010

53 yrs old

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 7/31/2010 11:16 AM (GMT -7)   
I would try everything drug wise before going for an ileostomy I had a temp one for 15 months and hated every minute of it Bev x  
Diagnosed with crohns at 13 now 43
Still battling with Doc's to get me on maintenance Meds only taking
Lomotil, 20mg citalopram,VSL#3 at the moment.

“I may not be where I need to be but,
I thank God I’m not where I use to be “
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