GI says my only option is surgery and I feel backed into a wall.

I know most of you have probably had surgery by now... I've avoided it until now. Been diagnosed 6 years ago next month and my GI says I'm lucky to have avoided it this long.

Remicade worked fantastic, then quit. Humira worked great, then quit. Cimzia has not worked and my scar tissue is so thick that he doesn't think trying another biological will solve the issue at this point.

The surgeon does think he may be able to do it laparosopically. They would remove the terminal ileum and part of the bottom of the colon, which has a long name I can't remember.

GI says I can continue living like this but my risk of obstruction keeps goes up and I'm popping Vicodin like candy. It's obviously not a long term solution but surgery isn't, either.

For those that have had similar surgeries, can you tell me honestly what your recovery was like? How long did you have before your disease began to give you problems again? GI says about 2 years is average but it differs for everyone.

I am also VERY worried about the financial aspect of this.  I have insurance, but it doesn't cover it all of course. 

Happy freakin' new year.

I had surgery laproscopically at the end of September, and it's really not that bad. The worst part was the anxiety I suffered while being in the hospital. I had 11 cm of large bowel removed, and 5 cm of small (if I remember correctly) to remove some bad scar tissue. I had three incisions. Two small ones (less then an inch each) on the left side, and one by my belly button that was less then 2 inches. I was in the hospital for only 2 1/2 days, and only took pain pills for maybe 3 days more. The pain is pretty much only when you get up/down and in/out of bed. Within a couple of weeks, I could ease myself onto my stomach to sleep. I had mild residual pain on my left side where they cut through the muscle for 3 months, but we're talking very mild discomfort there.

I'd definitely do it again, because my insides are much happier without that stricture slowing everything down. Plus, I no longer live in fear of the next obstruction.

For maintenance, I follow SCD and take Pentasa. I also just started LDN.

I had 18" small intestine and TI removed in Feb. It was done Lapro and like someone said It was a piece of cake. I got so worked up before and then when it happened I was like hmm that wasn't so bad. I was out of work for 2-1/2 weeks and I do physical labor. I believe the key is to get up and walk,walk, walk. But I must say that my surgery was short lived (10 months later). I just had a colonscopy and my Crohns is back. I'm not saying yours would come back as eveyone is different. I don't regret surgery and I would do it again if need be. The most painfull part was getting up and coughing the first week after surgery.
I know it's a tough decision and I feel bad that your at this crossroad. just relax and read all you can about surgery.

Happy New Year!!!

I was to the point of being miserable after even drinking, and apparently I had been living with an almost complete obstruction for at least a few weeks. It wasn't as much looking forward to having surgery, but looking forward to relief. Sure, surgery is never too high up on anyone's to-do list, but there comes a point when the quality of life is next to nothing, and something has to be done. I had surgery on December 21, and I feel about 85% now. Still taking an occasional percocet, but I could live without them. Pain is almost gone, and I haven't had any issues with food yet. My surgery was open, and resulted in about a 4-5 inch incision in the middle of my belly. My surgeon took out about 8 inches of fistulated, obstructed bowel that was basically a ball of diseased bowel. My surgery was about 26 months after my diagnosis, and I had quite a bit of scar tissue built up from when I was too stupid not to go to the doctor before to get diagnosed.

about the insurance issue - I don't know about you, but I'd much rather pay for comfort rather than live a pain-filled, miserable life. I know I'm not looking forward to my bill.

Thanks, all, for your stories - the timeframes and details on the surgery are really helpful. Did any of you need someone with you at home while you recovered? Or could you manage part of the day alone?

Ivy - my insurance typically covers 80% of things but I have deductibles to deal with before that kicks in. And that's if anyone I meet in the hospital is covered under my ins policy (last time I was admitted, the physicians were not and I had to pay 100% of those costs, at $250 a visit to my room). Even 20% of major surgery and a few days hospitalization is a huge chunk of money. Well, for me it is. When I was admitted for 4 days a couple of years ago, without surgery or anything, my out of pocket just for the hospital was $1500. Then the bills for each doctor, test, and lab work. It sucks that finances have to be weighed over health sometimes.

Aimee I had both my appendix taken out only to be found fine then another incision to find a abscess and complete blockage. They took out 12 inches of my small bowel. Six weekds prior to that my gallbladder was taken out by lap. My surgeries were done on an emergency basis.

I do know many times when drs come in & see a patient in the hospital the insurance will pay them whether they are on your plan or not. Its not like you can look at the dr before he comes in your room and ask if he accepts your insurance. This happened to me and my ins ended up paying. The hospital was on my plan so it was ok.

Also, the hospital will work with you on a payment plan. I would not let this get too far out of hand cause you sure don't want something else going wrong inside.

I came home and I did not have any assistance and was able to manage on my own. The best thing to do is walk, walk, walk after surgery. It helps wake up the bowels and helps you get your strength back. A bed pillow pressed lightly against your stomach is a must when getting up or down from bed or even a chair.

Take care.

Great idea Randy!! Aimee I have to agree with one of the posters above. How is your quality of life? It doesn't sound like you are doing very good and taking so much Vicodin can't be good for you either (but I understand the need). I was so miserable before my surgeries that surgery was the best option for me, no meds, nothing was working for me. I had two open resections and it took me about 6-8 weeks to recover from the surgery and get back to work. I was by myself for the first one with occasional visits from a homecare nurse (got infection in wound, and needed packing changes) and occasional visits from my sister. But for the most part you are okay to be alone. I would just suggest that you have someone to call in an emergency though, just for safety sake. I was even able to cook for myself, but Spooky's idea about preparing food beforehand is a great one.

As for how I am feeling now? It took awhile for me to adjust to the changes but I am now in remission and enjoying life again. One of my biggest tips for you would be sure to get on maintainence meds afterwards, I didn't after the first resection and ended up with another one only 3 years later. EEK!! I am successfully and solely maintained with Asacol now. Good luck with whatever decision you make. We are here to support you!

Hugs
Gail*Nanners*

Great info guys, THANK YOU!

I am married... but DH works so I wanted to make sure I wouldn't need to arrange for someone to be here during the day initially. Sounds like I should be okay; my colleagues can always jet here if I need something. I'm a minister... so I will have a church willing to bring meals and such, thankfully.

Regarding insurance. The hospital that my ins covers doesn't take payment plans. If you can't pay within 3 months, they will gladly open up a credit acct through a bank and you can pay the bank back. I went through that when I was hospitalized the last time and ended up taking a signature loan through USAA since it was a lower interest rate. I also appealed all the docs that weren't covered under my ins through my ins company and were all denied. I was told it's my responsibility as the patient to ask each medical professional if they are covered before allowing me to treat them. HOWEVER, this was all Blue Cross/Blue Shield and my company changed to Aetna as of today. I have high hopes they won't be as big of a pain to deal with regarding those things of things, though my DH already said he will plant someone in my hospital room to verify ins status of anyone that walks in. ;)

The policy is set by the church and I don't get much say. I HAVE been saving $ in a medical savings plan for a few years, though, knowing this would be inevitable someday so that will help tremendously.

As soon as I get the surgery details, I will call the hospital and talk about payment options and see if I qualify for an assistance program. Great idea.

My GI said he'd like doing Flagyl initially and then something like Imuran as a maintenance. Drop the biologicals for awhile. Sounds similar to what many of you have done. I hate being on drugs but know a maintenance drug is key.

I just switched from BCBS to Aetna this fall and so far Aetna has been WAY easier to deal with, so hopefully you will have the same experience.
Insurance issue aside, I think you should go for the surgery. I just had an ileocecectomy last week, removing about 12 inches total,which I put off until I had to get it done after going into the ER because I was obstructing even on a liquid diet. It was not the ideal situation for the surgery (I'm a college student and my parents flew across the country from my hometown to be here for the surgery on the west coast and I had to spend Christmas in the hospital), but I'm extremely glad that I finally got it done. The surgeon said the rest of my small intestine looked good and that he thinks I'll be doing great once I recover from the surgery. If things continue going well with the recovery, I feel like a week or two from now I'll be feeling better and healthier than I've been in about 2 years.
As for my recovery, they had to do an open surgery, but it still wasn't too bad. My surgery was a week and a half ago and I already feel much better than I did before. I spent about 6-7 days in the hospital after the surgery, but they kept me a bit longer than usual because I was in such bad shape before the surgery and they were worried about complications. I'm still spending a lot of my time watching movies and napping, but I am up and about enough to basically take care of myself at this point, and the pain is totally manageable and better every day (though I'm still taking some pain medication). I'm sure your recovery would be much quicker if they could do it laproscopicly.
My advice to you is to find a surgeon that you really trust and get it done, if your quality of life is really so bad and you don't have any other way of improving it. I had a great surgeon (he's the one that my GI, who I also really like, usually works with) and I feel it made all of the difference. I knew I was in good hands and that he had good bedside manner as well. I don't think any of us want to be faced with the decision of whether to get surgery or not because things have gotten this bad, but having gotten there, I'm really glad that I finally did it (basically because my GI said she thought it was the only way I was getting out of the hospital), and I wish I had just done it when it was first proposed.
Good luck!

And not all of us have pain for a couple of weeks after surgery. I was in hospital 10 days w/that resection in early 1978 but insurances weren't insisting on kicking you out of the hospital in the minimal amount of time back then so the criteria was I had to have a BM before release. (That 10 days includes the ER admittance day and the day of surgery). I was off all pain meds before I was released and never needed any at home.

Of course, I was desperate to get home so I could go to the Collie National Specialty that was held a month after my surgery so I walked, Walked and WALKED the hospital halls clutching my pillow to my tummy w/one arm and pushing my IV pole and pump with the other.

(No, I didn't make it to the National Specialty. I was still just too darn weak to fly and haul luggage and too stiff-necked to arrange for friends to do the heavy work for me - I was 89 lbs the day before the surgery, usual weight 110 to 115 lbs).

To this day I credit all the walking the hospital halls I did w/recouperating so fast and the early discontinuance of the need for pain meds.

Hi Aimee.  Sorry to hear about your sucky situation.  Unfortunately I share it with you.  Let me just give you a little of my story.  I was diagnosed in 2001 when I was 19 yrs old.  Right away I was put on pentasa and the like for a newly diagnosed not so severe case of crohn's at the time.  Throughout the years the disease became progressively worse and after being treated with every med possible that is available for crohn's and being hospitalized every couple of months my gi doc kinda gave me an ultimadum.  At the time I had such sever stricturing that the opening of the intestine was smaller than the width of a pencil.  For months I was in excrutiating pain.  Now here I was in the hospital again dehydrated and running 105.00 fever that the nurses were packing me in ice to try to get the fever down.  I was on three antibiotics, saline, i was having blood transfusions, high dose steroids and also my potassium was at a critical level so i was doing "shots" of potassium.  Eight of them in all.  I don't know if anyone has had those but they are the most revolting thing you can imagine.  Anyway I met with a colorectal surgeon and we all decided it was best to have the surgery to remove the almost blocked areas.  On August 12th (my husband's b'day) of '08 I went into surgery.  When I came out 7 hours later the surgeon removed a foot of my small intestine including my terminal ileum and ileocecal valve and also my appendix (although I don't know what my appendix ever did to him) but nontheless that was removed as well.  It was all done laproscopically.  I was also given a temporary ileostomy because of the steroids i was on prior to the surgey as a precation.  Steroids prohibit healing so if the surgeon would have just reconnected I had a higher rate of the intestine leaking and getting an infection.  I also woke up with an ng tube in my nose which was the most uncomfortable thing ever.  I wanted to pull it out but the nurse and the docs kept insisting it would go back in if i pulled it out.  I didn't pull it out.  I was in no pain as they had me on a pain pump.  The day after surgery the ng tube was pulled.  What a friggin relief.  The ostomy nurse came in and showed me how to take care of my new friend.  I ran a fever three days after surgery so i was in the hospital for a total of 6 days after surgery.  The most painful part of the surgery was coughing and trying to get out of bed.  I had the ileostomy reversed on Oct. 24th '08 approx. three months later.  That surgey was about 4 to 5 hours long and that one I think was worse.  I woke up in excrutiating pain.  I was given morphine only to find out I had a reaction to it and broke out with hives.  So they switched that to dilauded which is a gift sent from heaven.  I was left with an opening in the abdomen which was packed with gauze to reduce the risk of infection.  Again this one was more painfull for me.  I couldn't move or cough.  Then the diareah set in.  I couldn't stop going to the bathroom the next day after surgery.  Literally had butt burn.  Was sent home 4 days later and had to pack the wound for about 8 weeks until it closed.  Did a colonoscopy 7 months later and found out the crohn's returned at the reconnection site.  I was also told that the average remission after surgery is 2 to 5 years.  Not quite so lucky i guess.  Now it has been over a year since surgeries and I now have multiple partial small bowel obstruction episodes which i didn't have before.  If I had to do over again I would out of neccessity but if u don't need the surgery now I would try to hold off.  I don't want to scare you as this is only my experience.  Everyone is different.  Sorry about the novel I just wrote but just trying to give you some info.  I hope i've helped in some way and I wish you the best of luck in whichever you decide.