HealingWell
Search Close Search
☰

Considering surgery

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/8/2012 3:41 AM (GMT 0)
Keep us updated! If you have any questions or need contact info, email me!!
Posted 8/9/2012 2:07 AM (GMT 0)
My referal for my dx is universal uc, just wondering if anyone knows much about that dx. I go for my biopsy results tomorrow and now I'm more nervous. Any info would be so appreciated. Thank you.
Posted 8/9/2012 2:13 AM (GMT 0)
Is it hard for the dr and insurance to ok the surgery? I was told that if the uc is in the large bowel I'll have alot of liquid diarrhea and leakage from the ostomy bag, is this true?
Posted 8/9/2012 3:21 AM (GMT 0)
It shouldn't be any problems with getting approval from insurance as long as your dr is on board. My hubby's crohns was in the large Colon and his entire large colon was taken out. The output is more liquid when you have an ileostomy (stoma is connected to the small intestines), but that as long as you have the right combo of appliances, leaks can be managed. My hubby has not had one leak yet! He is very diligent in making sure to take care of his skin and now only takes 3 minutes to change his appliance. In th beginning it took a long time, but it really becomes part of your regular everyday thing. It really depends on your diet, but his output is pretty liquidy, but definitely has become more solid over time.
Posted 8/9/2012 3:53 AM (GMT 0)

For most of us, leaking does happen within the first few weeks until we find the right appliance & products which work for our individual needs.  It is a bit of "trial & error", but it only lasts for a short time until the right system is found.  There is no, "one size fits all".

Everyone here is tops when it comes to advice on any issue you may have.

You can also contact the ostomy supply companies in advance of surgery and get familiar with their appliances and other ostomy products.  They all have toll-free phone numbers.

I contacted Coloplast, Convatec, Hollister, Marlen, Cymed & Dansac for samples. All were fairly generous with pouch samples & products.   I explained that I had never even seen an ostomy pouch before and wanted to know what to expect and familiarize myself with the process.  They want your business, so they are happy to send samples.

In addition to numerous wafers and pouches, I was also able to get samples of Eakin and Adapt seals, just for asking. Hollister and Convatec also sent me their emergency kits which are very handy--canvas bags with scissors & mirrors. They will also send samples of stoma powder, paste, etc.   All for free :-)

I still call for samples if there is a new product I want to try.

This current thread has some good info about products and how to apply appliances.

https://www.healingwell.com/community/default.aspx?f=33&m=2480096

Posted 8/9/2012 3:53 AM (GMT 0)
I didn't have any issues with insurance either. My GI doctor put in a referral for my colorectal surgeon and I was set to go.

My whole large intestine is gone as well. It is true that output is more liquid with an ileostomy than a colostomy, but that doesn't mean you will definitely have leaks. My output is usually a applesauce-like consistency. Sometimes it is pure liquid and I still don't have leaks. I have only had one leak since my ostomy surgery 20 months ago and that was right after surgery due to wound drainage getting under the sticky part of my wafer. There is some trial and error to find the system that works for one's specific body and stoma, but once that is figured out, leaks shouldn't be a regular occurance.

When you meet with a colorectal surgeon or stoma nurse, they will often be able to paint a more accurate picture of what to expect than regular doctors who don't know as much about ostomies.
Posted 8/9/2012 4:11 AM (GMT 0)
Thank you all for responding, I feel much better now. I'd be a total wreck if it wasn't for all your much needed information. Your all a God send. God bless you all!
Posted 8/9/2012 1:30 PM (GMT 0)
Ditto on the above advice. Hubby had one bad leak/blowout and we were home...he had a chinese dinner of shrimp chow mein. fried rice and an egg roll less than 2 months after his surgery. Even though he chewed well and I had it cooked softer it was just way too much for him to handle and too much to eat. Actually it was kind of good it happened as it made him realize you just can't really sit down and eat like that especially in the beginning. It wasn't a blockage but about 4 hours later it was just too much for his system to pump out I guess.

Until we found the right appliance he had maybe 2 leaks that he could tell were starting and immediately changed the wafer. Since then everything has been fine.

As stated when you find the right appliance that your skin likes and depending on your stoma if you need a flat or convex wafer you will find it is not that difficult to manage overall. Not a choice any one of you really want to make when you think about it....but the trade off in getting your life back, out of pain, no more living on the toilet, the stress and anxiety associated with all the urgency and frequency and being able to attend functions you probably cancelled out on...priceless as they say.

There are some here who unfortunately don't have it all that easy due to other complications. But you cannot focus on the what ifs (I know I did and still do at times) as you have to go into this with high hopes. Even some who haven't had it all that great still would do it all over again as their lives are still better than with the UC.

As stated be sure you get an excellent CR surgeon and also one who has a good WOCN attached to their hospital that you will be having your surgery at. The surgeon is important of course but a good WOCN is a very important piece of the puzzle too.

And last and certainly not least you have the expertise of this forum and a lot of helpful advice already in so many of these different threads that make such a difference in sorting things out and their making sense.
Posted 8/9/2012 6:40 PM (GMT 0)
Yes, Christine was correct; I just returned from an 8 day thru hike in the Sierras. I can give you several CR surgeon recommendations in CA. I had my surgery in Los Angeles, though I live in Santa Barbara. Both NorCal and SoCal have some great surgeons; I'm not up on those in the central valley. Let me know the general area you are looking and I'll give you some names.

No regrets here. I had jpouch surgery 11 years ago and have been living a very full and active life post UC. No comparison!

Sue
Posted 8/10/2012 12:03 AM (GMT 0)
I'm in shock! My dr said no surgery, his reason being, I wouldn't like it and mine couldn't be reversed! He put me on apriso. 4 tabs every morning, which is like asacol, which hasn't ever helped me, actually made my uc worse. Oh and told me to keep doing the melamine enemas every night, which aren't helping either. I told him I wanted my life back and he said surgery wouldn't give me my life back it would cause more problems. Sorry, needed to vent
Posted 8/10/2012 12:31 AM (GMT 0)
Had you not detailed and outlined what your life has been like for the past 13 out of 20 years with UC then I would be thinking....listen to the Dr....he knows best.

Well....HELLLLOOOOOOOOOO I am only saying one thing about this and it is...definitely get another doctor.

(I don't know you Butterfly but I am super pissed right now..he sounds like an insensitive jerk)
Posted 8/10/2012 1:34 AM (GMT 0)

You need to get a new doctor--asap.  I am with Another UC Wife, totally pi$$ed mad

My old GI at least gave me a choice between surgery and Remicade--while very much pushing for drugs.  He did leave the ultimate decision up to me and I went with surgery.   My new GI [post surgery] told me that with the symptoms I was having that she would have done the very same thing that I did, and that felt so good to hear.

What did the biopsy reveal?   You are NOT living and your GI is certainly not helping you to wellness by using methods that have already proven to not be effective for you.

I know GI's are in the business of doing all they can by conservatively treating IBD with drugs and prolonging surgery for as long as they can.  From what you have described, I think your GI is bordering on malpractice with what he is telling you.

Can you see a surgeon without a referral?  My surgeon was awesome, but was very upfront about this surgery being permanent.  He knew I was done and had endured enough and I wanted my colon GONE.   After my surgery, he told me that my colon was in very bad shape and no drug would have ever helped.

Please get a new GI and keep us posted  :-)    Grrrrrrrrrrr mad

Posted 8/10/2012 2:01 AM (GMT 0)
I know lots of others have already responded to your initial question, but I just wanted to chime in and say I do not regret my surgeries at all! I had a temporary ileostomy for 6 months and have been living with my functioning jpouch for about two and a half months now. I am doing really well, pretty much eating whatever I want, going out and doing things, etc. I had UC for 11 years before I got to the point where I knew it was time to get rid of my colon. It has been a hard journey, but I would not undo any of it; I have my life back!

I agree with what has been said already- get another GI doctor! Seriously, the one you are seeing now obviously doesn't have your best interests in mind. Get a second opinion or two, find someone who cares about the condition you are in.

Posted 8/10/2012 2:12 AM (GMT 0)
I can't believe he told you to continue drugs that you tell him are not working! I also think you need to see another GI. I would tell them what state you are in when making the appointment. Also, if you went to talk with a surgeon, he/she might be able to send you to a GI who could then refer you for surgery? Particularly if they are part of a large practice with integrated GI's and CR surgeons. I know that sounds backward but it's worth a thought.
Posted 8/10/2012 2:46 AM (GMT 0)
My husband's local Dr treated him and went by the book and then some. She reached the point when he ended up in the hospital and asked if it would be ok to send a referral to Mayo Clinic. She felt he needed more specialized intervention and they are certainly more cutting edge than her small practice. We had a wonderful relationship with her and it broke her heart to see him in such dire straits even though he was finding a way to cope with it all.

Once he got to Mayo Clinic and they did their testing, colonoscopies and closely monitored his care his GI doctor honestly thought surgery was in order. It took my husband two more years and a very honest no holds barred conversation with his local GI doctor. She was so concerned if he kept going this way it was only a question of time in her professional opinion it may be a cancerous situation. So not only would he be dealing with his colon being removed but a compounded situation in addition.

All in all I think it was 6 years that he suffered, was on all the heavy duty meds, tons of pain meds, failed remicaide, steroid dependant..nothing worked. I can't even imagine 20 years and the past 13 you have been dealing with.

His GI doctor at Mayo is part of the team that his CR surgeon is part of. The advice of an integrated practice is good advice as it was very beneficial and efficient.

Nobody here wants to come off and tell somebody to have surgery. It is a personal decision and one that each person knows when it is right for them. That being said when a person is in your situation the last thing they need is a doctor unwilling to listen and assist you and help guide you.

Any GOOD gastro doctor who has a patient such as yourself should be supportive and help you get the best help there is.

I would speak with my insurance people and their customer support on how you proceed in a case like this. You should have no problem being able to switch doctors. Hopefully you have good personal copies over the years of treatment, tests, colonoscopies etc. if this doctor's office is not cooperative or forthcoming with info in a timely fashion to get you up and running with another practice.

It is time for you to get your life back! (I read this thread to my husband and he is very mad too...I can't type the things he said about your doctor...lol)
Posted 8/10/2012 2:53 AM (GMT 0)
It's not up to your GI to tell you if you can or cannot have surgery!! If you are in an HMO you can demand to get a surgical consult. If you have a PPO, you can go see a CR surgeon without a referral. Do not let your GI push you around; surgery isn't his decision; it's between you and your surgeon. darn, I get so angry when I see GIs doing this.

Sue
Posted 8/10/2012 3:37 AM (GMT 0)
Agreed with everyone! My gi wanted me to try remi, against my better judgement I did. When it failed i went to him and actually said "either you find someone to cut this out of me or I will" and I didn't mean find a surgeon I meant cut it out!
Your gi has no right to tell you you won't like it! That's just rude on his part, and really none of his business whether you like it or not. Tell him you don't like being sick all the time and you think popping in a bag sounds much more enjoyable. I bet he has no comeback,lol.
Good luck!
Posted 8/10/2012 11:29 AM (GMT 0)
You need a new gi, asap. Even if you weren't going to have surgery, he's not offering you the meds that might help. Asacol is like aspirin .... it only works in very mild cases.

If you can find an IBD specialist at a teaching hospital, that's the best ... I didn't realize that was a sub specialty, but it is. I switched gi's at one point and it made a world of difference. You need someone who sees the full range of cases, which includes lots of folks w/good surgical outcomes.

Don't go back to this gi -- he is not working in your best interest. You can get your own surgical consult independently too, but it is better if you can have a good gi on your side.

Angry for you w/the others.... he's not doing his job and you deserve much better treatment.
Posted 8/10/2012 11:49 PM (GMT 0)
Thank you for all your support! I have HMO insurance so my Primary Care Dr is sending me for a second opinion. I pray I get a caring and understanding GI who will support my decision for surgery. Have a great weekend everyone
Posted 8/11/2012 12:37 AM (GMT 0)
Can you do some research and if you find a specific Dr that is highly recommended request your PC to put you in touch with that Dr for the 2nd opinion?

(I say this as my PC needed to refer me to a hematologist and I had the name of one I specifically wanted as well as an orthopedic doctor. This way I was sent to the Drs of my choice who I knew were the ones I needed and wanted to handle my situations.)

I like my PC and don't doubt his confidence but since I was prepared and knew of these great doctors, I didn't want to go to anyone else. Each time when I suggested the referral for those Drs he agreed that they were excellent Drs and had no problem sending the referral to them on my behalf.

Sometimes we have to advocate for ourselves.
Posted 8/11/2012 2:01 AM (GMT 0)
Honestly we don't have any good gastroscope here in Bakersfield Ca, but thank you for letting me know that. I'm going to talk to my PC Monday and let him know I'm even willing to go out of town if I have to.
Posted 8/11/2012 2:29 AM (GMT 0)
     Oh, so sorry to hear this butterfly!  I just returned from the Jersey shore where I was hospitalized for dehydration.  Second time for this since my surgery two years ago...I am a baaaaaaad girl rolleyes !  I like to soak up the sun too much (I have olive skin and tan easily) and forget that I am not drinking enough.  This time was scary though.  My mind kinda went.  I have no recollection of hubby driving me to the ER, nor the treatment I received when I arrived.  My husband said the dr was asking me who the president was and I said Clinton..lol.  I also thought the year was 2010..oy.  Glad they got those fluids into me.  My own fault though, I KNOW I am supposed to drink a lot of water.

     Back to you....I believe I told you my GI doctor refused to send me to a colorectal surgeon.  I had to find one online.  A lot, though not all, GI doctors just want you to try more meds.  Hey, that is how they make the big bucks!

     I see Suebear is back from vacation.  I am not familiar with any medical facilities in CA, maybe Sue can suggest someone out there.

     At the time of my operation I had Personal Choice Bl Cr and Bl Sh.  A terrific plan!!!!  Not one cent out of my pocket.  I am now on Medicare with Pa Bl Cr and Bl Sh as my secondary ins.  Medicare is a pain in the butt.

       Good luck to you!  Get another opinion!

Posted 8/11/2012 2:39 PM (GMT 0)
Get yourself referred to Dr. Robert Beart at Glendale Memorial Hospital in Glendale. He's the top CR surgeon in CA having done more than 2,000 jpouch surgeries. He can also do the kpouch or a permanent ileo. He did my surgery 11 years ago and is the best.

Sue
Posted 8/11/2012 3:35 PM (GMT 0)
Hi all!

I have UC and am also considering surgery. It's been a tough 2 years and I want my life back! What I wound like to know is what complications you may have experienced and the recovery time. I don't mind traveling to get a good surgeon but was wonder how long you stay in the hospital and how long I may need to wait until I feel up to traveling back home.

Looking to do the bag and not the J-pouch. One surgery is enough for me.

Thanks!
Posted 8/12/2012 3:48 AM (GMT 0)
I chose a bag too, didn't want the extra surgeries either. There can be problems, leaks, adhesions, dehydration. Those are rare. Recovery is very hard, takes about 6 weeks until you feel better then it can take up to a year to get your energy back. But its worth it.
✚ New Topic ✚ Reply
123