How much and how long do you suffer before electing surgery???

There are lots of ways to get onto group insurance if you own your own business.  Start by checking with your/or his local chamber of commerce.  If that fails take the type of business he is in and google group insurance for like businesses in your state. 

I have always been insured under a group policy and have a range of plans to choose from e.g. HMO to PPO.  I can change plans annually if I choose.  Pre-existing conditions are never questioned and I can't be dropped.  In all the years I was sick and through surgery I have only had one bill that was problemmatic to pay and that was to Prometheus labs.  Fortunately my employer has a health care advocate and she was able to work with both the lab and the insurance company to get that paid. 

Sue

thanks for your reply Comedydork, i lost it in all the talk on insurance (which is very different in Aust). I'll add your questions to my list. hope remicade works for you. how many ops in a year do you think is the minimum?

i know that keyhole surgery is more desirable because of the recovery times, but if it compromises the prognosis at all then i think a bit of short term inconvenience is worth it. my GI dr told me i would need to lose a couple of kg for keyhole surgery - must be all the feel good chocolate i have been eating lately. :)

are 1 stage j-pouch operations becoming more prevalent or are there a lot of factors which affect such a decision?

cra43--Would your son be eligible for Medicaid or some sort of state program? That could be something he could look into along w/ other insurance plans.

TammyUC--I was at CC just last week and met w/ my surgeon then. I'm slowly and surely getting back my UC symptoms. So as long as my scopes and such come back as UC and not Crohn's, I'll be having surgery.  

summerstorm--Is the 40K just the surgery itself, or does that include charges of hospital stay?

Y2K Bug--I agree w/ Sue. Go for the best (most experienced) surgeon. I would love to have a one-step surgery, but my surgeon is saying absolutely not. And since he's one of the most experienced, I won't argue. My biggest reason for laparo is b/c it will probably affect fertility less than open/traditional.

cra43, anyone under the age 18 can get Medicaid.....easy! Just ask!

As far as insurance goes, if you are paying "out of pocket", you are feeding a fat mans wallet.

The best price I could get with my UC problems was $400 monthly and would not kick in for 6 months after. And still there are restictions as to how much they would pay. By me checking what the Dr. wants "CASH" and what the hospitals will settle for, is the winning solution for me.

My father had 2 emegency heart sugeries within 5 years and each one cost $30,000 and the hospitals where happy with his $200 month payment. He is still paying on them, but his money applied is 100%

He would have payed $1200 month for 7 years of insurance when he first started check it out when his high blood preasure was diagnosed. Do the math!

jpouch surgery procedure is more complicated than open heart surgery? seriously!?

My surgeon was Dr. Robert Beart at USC in Los Angeles.  However, their are many experienced surgeons in most metropolitan areas.  If pursuing surgery you can get a surgical recommendation from www.j-pouch.org

And seriously, it is more complex than open heart surgery!

Sue

Tammy,

The surgery can be performed in 1, 2, or 3 steps.  It depends upon how sick you are, and how long, or if you have recently been on prednisone.  Your surgical consult will explain that to you.  The jpouch is not reconnected to the rectum, the rectum goes with the colon (as well as the appendix).  The jpouch is connected to the rectal cuff which is about 2cm of remaining rectal tissue.  Each surgeon has his/her own schedule for time between steps.  My surgeon did 2nd surgeries at 8 weeks but the most common is 3 months.  Most of what I have learned about the jpouch, the surgery, and the recovery has been from jpouch patients on the www.j-pouch.org site. 

I didn't pick my surgeon, my insurance company did.  Long story short I really didn't think I would go through with surgery-too scared of the unknown.  But I did muster up the courage to at least do a consult.  It was only after my consult that I learned that my surgeon was one of the tops in the US.  That kind of sealed the deal. 

I get an annual biopsy and scope of the pouch.  It is not done under sedation and I don't find it too uncomfortable.  I have my surgeon do the exam because I live in a small town and none of the GIs here have j-pouch experience.  I found that jpouchers are split on follow-up care; some continue with the surgeon and others see GIs.  Good luck with your consult!

Sue

Thanks so much for the info. I found lots of info. on j-pouch.org and also found who the popular surgeons for this procedure are. I reschedule with Dr. Remzi, anyone seen him???

Bennie, that's just how I feel right now cause with the steroids I have a different attitude than I did when I began them 3 weeks agon. Before I started them I told my husband, 'boy am I ready to get rid of this defective colon".  Now I'm like well everything is OK for now let's keep things as they are. I' know what your going through and that must be really tough for a 17 y.o. girl to have to face.

I'm 40 w/ a 2 y.o. and 5 y.o. and I'm having a hard time keeping up w/ them. One of my other BIG problems is fatigue. I actually take something every day to help w/ being so tired otherwise I don't know how I'd get through the day. I look forward to getting some energy back.

Does anyone else have a problem w/ fatigue???

Tammy

Just a quick add-on to what suebear said about 3 vs. 2 vs. 1 steps. There are some surgeons who won't do a one-step no matter how healthy the patient is.

The reason is because though the risk of bowel leakage from the anastomosis site (where the pouch and rectal cuff are joined) is small, it can be absolutely catastrophic if it happens--like, "lose the pouch completely" catastrophic. At Mayo, for example, they have basically decided that it isn't worth the chance. On the other hand, there's a surgical group (I think at the Medical College of VA?) where they are routinely doing the j-pouch in one step. *They* think that the risk of later obstruction at the site of the old ileostomy is higher than the risk of leak from the anastomosis. Go figure!

I'm not sure if it's the steroids (my paranoia) or just my impending situation however, just thinking about the intricacies involved in the surgery is making me really nervous!!!

My situation may be a little different in that I was diagnosed with Crohn's disease for most of my illness, recently I went to the Cleveland Clinic and they are labeling it Ulcerative Colitis. I asked my GI from Univers. Hops. of Cleveland and the Cleveland Clinic to do a consult and find out which one it is. Brzezinski (my GI at the Clinic) sends me a letter saying they pretty much they can't be 100% sure but they think it is Colitis and they are still going to view the pathology slides and  hopefully have an even better idea.

In reading about all this I learned that you can develop Crohn's disease after the surgery. What happens then????  My GI didn't seem interested in salvaging any of the non-inflammed colon that I have left about 50% he says it will come back within days. But if it moves to the small intestines isn't that going to create a HUGE problem????? Isn't that something that you really need to keep your body going???? Has anyone's surgeon talked about that????

What happens if they don't get the pouch just right, if all else fails you end up with an external pouch?? Is this correct? Forgive my ignorance of all this I was recently led down the surgery path and am trying to learn all I can.

This is sure helping me get my questions ready for my surgeon. Thanks a bunch!!!

Tammy,

You are in excellent experienced hands with Dr. Remzi. Don't worry. As for Crohn's, no one is 100% correctly diagnosed with either UC. Crohn's can manifest several years out of surgery but that's a risk that ever UCer takes when having surgery. Discuss this with Dr. Remzi. Several jpouchers have gone on to get a Crohn's diagnosis and are doing fine on medication. Others end up going back to surgery for a permanent ostomy as they find that they cannot manage the disease with a jpouch. Since you are going to the CC you are at one of the best hospitals in country for IBD and CR surgery. If Remzi feels you have UC, you probably have UC.

As a side note my GI felt for sure that I had Crohn's. I was fairly confident, due to my 12 year history with IBD, and my symptoms, that I had UC. My surgeon also believed I had UC. My surgeon and I were right!

Sue

Tammy,

I wasn't diganosed with Crohn's first, I was diagnosed with UC.  After 10 years and my last horrible flare my GI changed his mind about my diagnosis (remember there is no proof positive test as of now) because 1. he couldn't get me to acheive remission and 2. my frequent episodes of vomiting.  In his experience vomiting was a symptom of Crohn's.  However, vomiting is also a symptom of UC, he just didn't know that.  In my mind I knew I had UC.  I knew my symptoms, other than vomiting, were limited to my colon.  I never had stomach pain.

Sue

Tammy,

I had zero pain with UC and it is unusual.

I opted for surgery because I became more afraid of long term use of prednisone than I did of surgery. I needed to be off that drug. Nothing else at the time worked for me. Your doctors at the CC should be able to help you navigate through the pros and cons of continuing treatment vs surgery.

Sue