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Posted 11/30/2017 2:17 AM (GMT 0)
I miss you! Think of you often as I adjust to life with an ostomy. I don't know if you saw my latest update but pathology on my colon came back that it was definitely Crohn's and not UC. My CRS said he'd do a j-pouch but with the understanding that it would more thanlikely need to be removed at some point. I don't think I want to put myself through all that, as the bag isn't so bad and I am so relieved to be (almost) free of the meds--my hair is slowly growing back post-stelara and I feel weird not taking 6-8 mesalamine pills per day, as I did for nearly 13 years. I'm down to 15mg prednisone! Weaning is hell but after a couple rough weeks my adrenal glands must be starting to recover.

How can I get a hold of you? XO
Posted 11/30/2017 5:00 AM (GMT 0)
Plucky...

I have been thinking of you so much...wondering how you are....if your holiday season this year is better than last year...(I bet It is...even with the learning curve and weaning from prednisone!)
I bet you are enjoying your little one and all the activities you are doing together!

Deciding if you want to risk a jpouch is a difficult decision. My suggestion would be to wait 6 months to make a decision. (A friend advised me to wait a year...and my CRS and GI have stated that they can still hook me back up for a very very long time after the ostomy surgery) At 6 months I felt even better than at 2 or 3 or even 4 months. Your learning curve will start to level out and your health will keep improving at 6 months....so your decision may change several times...

Me...I still have a RVF that I have to go in to talk to them about in 3 weeks. I think we may have to address that issue after all. Some people live with them for years....so I am conflicted. I have heard the surgery on a low RVF is very painful and not very successful.....hmmmmmm. (You should hear grinding sounds about now cause I am really thinking about this...lol)

I miss you too my friend....Email me if you want.....

Clo
Posted 11/30/2017 11:27 PM (GMT 0)
Hi Ladies!!

Plucky!1 So nice to hear from you! How are you coping?
How's your hubby doing?

I think of you both often. It's strange that they'd offer you a jpouch with CD. I thought it was always a non-option? It seems that things in Canada are very conservative when it comes to any bowel/fistula surgery....as in they give you one option....bag. I'm doing very, very well on Stelara but it has not touched my peri anal disease. My RVF has busted open (no stool or discharge) and now I'm concerned that I have a bowel/bladder fistula. Awaiting and MRI appointment. My CRS won't even schedule me for an I & D until we go through the prosess....even though I'm in pain; especially my lady bits. Chiro helps my perianal. I seem to be the only one stressing the urgency of this situation. Last thing I want is to end up in ER screaming in pain again especially over the holidays.

I have a HUGE favor for you both. I've checked in with the Mayo and it's far too expensive. I've been in contact with a clinic in LA and they do LIFTS/Flaps but I wasn't impressed with the service I received thus far. I know you are in Texas (?). I'm wondering if you both wouldn't mind contacting your CRS on my behalf to see if they would at least consider repairing my fistulas?? It's utterly infuriating that repairs aren't done in Canada. I understand a LIFT might fail but living like this is just traumatizing and torturous. If they do it, would you mind providing me with their contact info? I can fax my reports and we can go from there. Btw, I failed the setons and another drain isn't an option.

Thank yousmile

I'm so proud of you Plucky! You'll be off the prednisone in no time! How often are you emptying?
Posted 12/1/2017 3:18 AM (GMT 0)

U B Tough said...
Hi Ladies!!

Plucky!1 So nice to hear from you! How are you coping?
How's your hubby doing?

I think of you both often. It's strange that they'd offer you a jpouch with CD. I thought it was always a non-option? It seems that things in Canada are very conservative when it comes to any bowel/fistula surgery....as in they give you one option....bag. I'm doing very, very well on Stelara but it has not touched my peri anal disease. My RVF has busted open (no stool or discharge) and now I'm concerned that I have a bowel/bladder fistula. Awaiting and MRI appointment. My CRS won't even schedule me for an I & D until we go through the prosess....even though I'm in pain; especially my lady bits. Chiro helps my perianal. I seem to be the only one stressing the urgency of this situation. Last thing I want is to end up in ER screaming in pain again especially over the holidays.

I have a HUGE favor for you both. I've checked in with the Mayo and it's far too expensive. I've been in contact with a clinic in LA and they do LIFTS/Flaps but I wasn't impressed with the service I received thus far. I know you are in Texas (?). I'm wondering if you both wouldn't mind contacting your CRS on my behalf to see if they would at least consider repairing my fistulas?? It's utterly infuriating that repairs aren't done in Canada. I understand a LIFT might fail but living like this is just traumatizing and torturous. If they do it, would you mind providing me with their contact info? I can fax my reports and we can go from there. Btw, I failed the setons and another drain isn't an option.

Thank yousmile

I'm so proud of you Plucky! You'll be off the prednisone in no time! How often are you emptying?

Hey UBT!
So you talked to Mayo but I suggest you speak with Cleveland Clinic and also Mount Sinai hospital in New York--much closer to you than where we are in South. My hospital is ranked 27th nationally in gastroenterology, which isn't bad but it means there are 26 hospitals that are considered to be better and if you are taking the time and trouble thenyou should seek the best. I can't imagine any of them will be moderately priced--healthcare in the US is not "affordable". But of course I will look into it for you. My IBD Specialist will surely have a suggestion.

I was surprised my CRS offered me a j-pouch but he is a very down to earth guy and he said "some people have issues with the bag and would rather get a few years out of the pouch--even with complications" and apparently he is willing to help them even though it's not the best course of treatment. I really like my surgeon. But he never once asked about or looked at my fistula outside of surgery--no interest whatsoever--so I highly doubt he would the one to go to.
Posted 12/1/2017 3:24 AM (GMT 0)

clo2014 said...
Plucky...

I have been thinking of you so much...wondering how you are....if your holiday season this year is better than last year...(I bet It is...even with the learning curve and weaning from prednisone!)
I bet you are enjoying your little one and all the activities you are doing together!

Deciding if you want to risk a jpouch is a difficult decision. My suggestion would be to wait 6 months to make a decision. (A friend advised me to wait a year...and my CRS and GI have stated that they can still hook me back up for a very very long time after the ostomy surgery) At 6 months I felt even better than at 2 or 3 or even 4 months. Your learning curve will start to level out and your health will keep improving at 6 months....so your decision may change several times...

Me...I still have a RVF that I have to go in to talk to them about in 3 weeks. I think we may have to address that issue after all. Some people live with them for years....so I am conflicted. I have heard the surgery on a low RVF is very painful and not very successful.....hmmmmmm. (You should hear grinding sounds about now cause I am really thinking about this...lol)

I miss you too my friend....Email me if you want.....

Clo


Emailed you
Posted 12/1/2017 5:00 AM (GMT 0)
UB,

Have appointment in 3 weeks with CRS..will ask then. I think I too would contact the Mayo Clinic...just to see...... But I will check. My CRS won't touch my RVF unless things go terribly south....and expensive. Just had a colonoscopy in August...they bilked my insurance over 10,000.00 for it. Plucky is right...health care is not affordable... Hang in there and I will message you here and then we can email if you want.

Plucky,

Just got it. Will respond asap...

Clo
Posted 12/5/2017 5:28 PM (GMT 0)
Thank you both. It's so weird that Canada is more conservative. They just want you to get a bag....even though my crohn's is close to remission (afraid to jinx it). I'll check Mt. Sinai in NY. The issue is not necessarily the cost for the surgery but that I'll be by myself and need a hotel/food etc for 2 weeks until I can fly home. The clinic in LA was pretty reasonable (I think around $4000 U.S), far cheaper than the Mayo but it's the hotel bills that make it unaffordable.

How are you feeling Plucky? And your hubby? Does it feel strange having a bag attached to your skin?
Posted 12/5/2017 9:44 PM (GMT 0)

U B Tough said...
Thank you both. It's so weird that Canada is more conservative. They just want you to get a bag....even though my crohn's is close to remission (afraid to jinx it). I'll check Mt. Sinai in NY. The issue is not necessarily the cost for the surgery but that I'll be by myself and need a hotel/food etc for 2 weeks until I can fly home. The clinic in LA was pretty reasonable (I think around $4000 U.S), far cheaper than the Mayo but it's the hotel bills that make it unaffordable.

How are you feeling Plucky? And your hubby? Does it feel strange having a bag attached to your skin?

As far as acommodations go, Cleveland Clinic should have plenty of affordable options--wherever you go, I would suggest looking into VRBO or homeaway or some other sort of website where owners list their properties as you could rent a guest house or apartment for a very reasonable weekly rate. Then you could arrange to have a meal service deliver meals, or if you have access to a kitchen you could heat up soup/make easy things. I wouldn't waste $ on a hotel as a very nice VRBO might be $500 for the entire week and even the cheapest/crappiest hotel is more expensive than that.
I'm getting used to the bag. It's really not as big of a dealas it seemed beforehand. Even when I have issues such as a leak, I keep supplies and extra clothes with me and I can either change my bag in a private restroom or in the car--had to change it yesterday in the bathroom at toddler's little gym class, took 5 minutes and no one noticed. I do what I want, when I want. I'm throwing a party for 50+ people at my home this weekend with no hired help--I'm planning, shopping, cleaning and cooking all by myself. I couldn't even conceive of doing half of what I am now capable of when I was sick. So I like my life with the bag.
Posted 12/6/2017 5:00 AM (GMT 0)
UB,

Wow I didn't know Canada was like that.... Part of the issue is that you will probably need help during that time too....hmmm...

I agree with Plucky...I would check out the VRBO. NY is really pricey usually...but you may be able to get something... Maybe their websites offer something...some information on it? Dallas Baylor does not have anything on their website...but I will check when I go in. Could you make a list of questions so I will be sure to get all the info I can?

I will try to research. It won't be happening in the next 72 hours...Remicade and methotrexate day....so will brain incapacitated during that time...(sorry)

Will check in tomorrow...

Clo
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