Should I Get Surgery? (UPDATED!!!)

Sorry if this has been posted before, I've looked for information everywhere but it seems to be lacking.

I'm going on 22 and severe ulcerative pancolitis has all but ruined my college career. I'm taking Humira once a week now, because on one pen every other week I was still having blood in my stool. I get a severe flare-up (I mean being hospitalized for at least 4 days severe) every 6 months-ish. I know it doesn't seem often, but when I get them I am out of commission for 3-4 weeks. All the other medications have failed me by either not working or causing a bad reaction.

So on Thanksgiving I got strep throat. No biggie, I went on penicillin and it seemed to be clearing up. Then I started having intestinal problems. Basically, I stopped eating and after going to several doctors and spiking a scary fever every day, I ended up in the hospital with C. Dificile. The radiologist was impressed with how inflamed my colon was. So, they keep me in the hospital for about 5 days and of course put me on flagyl which only exacerbated the problem because it hurts the intestines like hell. So, I finally finish the Flagyl but I am still having problems and pain, and can barely eat. I lose 15 lbs in 3 weeks. I go to the doctor when I am peeing blood and she says I have a UTI which can cause abdominal pain. So I take THOSE meds and figure I'll feel better when that treatment is over. Oh, and of course while all this is going on I am having the horrid canker sores all over my throat and uvula which are of course side effects of a UC flare.

Well, it's been over for a while and I still can hardly eat or sleep because of the pain. I try so hard to get the calories in because I feel like I am wasting away. I try to walk for half an hour and I pass out from exhaustion when I get home. I keep vomiting for no apparent reason.

What I am trying to say is that I am sick and I am sick of UC ruining my life. I've missed so much school because of it, and it seems like nothing I do can prevent the flares. It's stressing me out and I know Humira won't last forever. I want to get the surgery done so I can be normal and while I can still stay with my parents so they can take care of me. I'm supposed to graduate next December and after that, who knows what will happen? I can't really take months off of work.

I'm meeting with my GI tomorrow and I want to know some points to bring up with him. No, I am not DYING or at the very last straw, but I don't want to go through with that process. Life is painful enough already. It seems like it is the most sensible thing to do over vacation so MAYBE I will be able to make it to school next semester. I can't live with this pain anymore. It seems like the changes with surgery are so minor compared to what I have had to do with the UC.

Anyway, advice? Comments? Anything would be appreciated. I've been looking up a lot of information on the surgery, but more information is welcome.

Thanks,

Kelly

UPDATE (also found in comments):

Hey guys! I want to give you an update, sorry it took so long!

SHORT VERSION: I had emergency surgery because I was septic and had a total colectomy with ileostomy. I plan on getting the j-pouch surgery in April.


INTERESTING VERSION:
So I took your advice and looked up a bunch of stuff online, and scheduled an appointment with a surgeon on Monday (1/3/11) as well as a upper endoscopy and lower endoscopy for the that Thursday.

Here is where it gets interesting! On Sunday morning I start throwing up. I don't think too much of it, I figured maybe it was the tylenol or something. That afternoon I develop a fever of 102.6. My mom called my GI doctor and he told us to go to the ER. I, of course, dragged my heels because I hate the ER.

Anyway, we get there around 6:30 PM and they schedule me for a CAT scan. I'm tachycardic at 125 BPM. They FILL me with fluids and run a bunch of blood tests. My mom and I wait and wait and wait. She leaves around midnight. At about 1:30 I go into the CAT scan. Results are as expected, a severely inflamed colon.

So I keep waiting, I'm talking to some doctor or another where the overwhelming urge to go to the bathroom comes over me. Like, I had to go NOW. So I sprint to the bathroom where (TMI) I have a ton of diarrhea that is pretty much water. Feeling better, I go back. Once I am hooked up to the machines, the nurse swears because my BPM has spiked to 140 and my BP is 80/40. I start shivering. My temperature has risen to 104. I get the rigors and they do a billion blood tests on me. I can't stop shaking.

A doctor comes by and tells me that they are going to move me to a special room in the ER (later I found out that it was some sort of intensive care ward) where there will be more nurses around to check in on me. Everybody was so calm, I never suspected anything.

So they move me, and these nurses start sticking electrodes all over me, telling me that they are doing an EKG. I didn't think much of it, I was on pain medication. Then they tell me that they are going to insert a catheter. When I question them, they tell me that they want to measure my fluid output. It didn't hurt, surprisingly.

So I am lolling in my room, delirious from pain medication and fever, when they tell me that I might have to get a blood transfusion. It's early morning at this point. Then it dawns on me. I need to call my parents. I am very, very sick. I call my mom, no answer. I call my dad and he is waiting for the train. I said "NO YOU CANNOT WAIT FOR THE TRAIN I AM VERY VERY SICK!!". He decides to drive down, but he is about 45 minutes away.

I'm panicking a bit at this point. I can't contact my mother. A surgeon comes in and tells me that I may have surgery that day. She sort of explains what is going on. Another surgeon comes in soon after and tells me that I will be having surgery in the next four hours. She says that my colon wall is so thin that bacteria is leaking out into my bloodstream. I am becoming septic.

At this point, I am freaking out, but hoping that my parents will be there in time. I call and call my mom to no avail. I call her wife and tell her what is going on. Luckily she works nearby and leaves to come over the second I told her what is going on. She promises to get into contact with my mom.

Of course, the icing on the cake is when the next nurse came in and told me that I am on the waiting list for the Operating Room RIGHT NOW. Another surgeon person comes in and has me sign a sheet saying that I know I will be having surgery and that I understand the risks. I ask her a few questions, but what is there to ask? I need to have this surgery or I will DIE.

I'm in tears, trying to prolong the time before I have to go up to the OR. My mom's wife gets there right as they start wheeling me up to the room. She's in tears, but says she finally got into contact with my mom. The nurses had taken all my possessions by then, including my phone. Dad gets there and finagles his way to me soon after. We're waiting on my mom. Her wife is on the phone with her, the nurses are directing her to the waiting area, not to me. Finally, she manages to get up to me as the anesthesiologists are explaining what is going to happen. She must have driven like a madwoman to get there on time.

Since I was so full of fluids, they had to cut my ring off. I kiss my parents goodbye, and they give me a drug to help me "relax". I don't remember anything after that until I am getting a blood transfusion after the surgery, but that is still very fuzzy.

I also got pneumonia afterwards because when they took out my breathing tube I inhaled a bunch of fluid in it. They thought I had a pulmonary embolism, but luckily not! I was on oxgen for a while, though.

I had a total colectomy with ileostomy, and in April I am getting the reversal surgery and J-pouch. I was only in the hospital for a week, and it is 2 weeks today since my surgery. It was all such a blur, and I was so unprepared. I am still getting used to it.

Oh, yes I have tried enemas, all the 5ASA's, 6MP, Prednisone, Colazol, Asacol, Lialda, Remicade, low residue diet, etc. It just seems like when it wants to flare, it FLARES and even if I eat nothing, it doesn't subside. I'm pretty much at the last straw. :-/

I've tried to live off of Ensure, but no dice. I feel like I've gone through everything and it has failed me. I figure if there is a cure and the side effects aren't as bad as my UC, why not do it?

Thank you for the suggestions, and I'll be sure to bring up everything with my GI. :)

Yes.

I sympathize with you about trying to make it through college with UC. I was lucky in that Remicade drastically improved my symptoms long enough to finish my last quarter, but by the time I took my last final it had already begun to stop working. I also had pancolitis and tried Humira after the Remicade failed and saw no improvement; at that point i decided to go for the surgery. I never felt any relief from changes to my diet or rectal meds either.

I am now four weeks out from step 1 of 2 of the j pouch surgeries and have had my fair share of complications. Still I am very happy with my choice and as far as my digestive system goes I'm feeling better than I have in years. If you do decide to have the surgery know that there will be some very rough weeks and at times you will wonder why you chose to do it. I was really depressed about having the ileostomy at first, but it's temporary and worth it to be free of UC.

This is a complicated major surgery so find a surgeon that you feel comfortable with. Make sure you understand all the risks involved and learn as much as you can to make an informed decision. If you haven't already checked out Jpouch.org make sure to visit them and read up on everything they have there. Whatever you decide to do I wish you the best of luck and good health in the coming year.

i was 21 when i got sick and i wasted my entire 20s with that stupid colon ruining my life! i had surgery 8 years later and life is great now!
I didnt try all the meds, i didn't try all the diets, i didn't want to try the diets, that seemed like a big sacrfice to me. I was tired of trying meds hoping they would work and being sick when they didnt
Surgery shouldnt be thought of as a last resort. It's not, its a way to get your life back, to take back control.
Is it hard? yes.
Is it a big adjustment? yes.
Is life better? yes!

Since you have/had C-diff, I would try fecal transplantation first. You can do it at home.

http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

I would also start taking probiotics.

If that didn't work, then I'd get surgery.

You want have to wait months to know. If you don't see any improvement after 10 treatments of fecal transplantation, then you pretty much know that the fecal transplantation didn't work.

BTW, fecal transplantation got me out of a serious flare when I was pred dependent, and I only had time to do three treatments.

Post Edited (subdued) : 12/30/2010 3:24:56 AM (GMT-7)

I think it is smart to talk to a surgeon regardless of what your gi says. I have had this disease for about five years. The drugs have worked for a time, but then I was either allergic, they stopped working, or (my issue now) my liver was affected. I was only hospitalized once. I will have my surgery on Monday at the Cleveland clinic. I am terrified that something will go wrong, but I have to do it and I know I am in good hands. Let us know where you live and maybe someone can chime in with a good surgeon. Be picky...I live in Indiana and won't let anyone here touch my colon.

Good luck and remember it is your decision, not your doctor's. You are definately a good candidate.

Wow! Thanks for all the advice, everybody! I checked out the jpouch website along with a few other sites. I live in Massachusetts and my GI is at Mass General Hospital, which is really good from what I hear.

We've been mentioning surgery for a while now, I just have to get my parents to stop freaking out. They always assume the worst, but it seems like all the side effects of surgery aren't as bad as a flare and most of them go away after some time. I guess the biggest problem I worry about is infertility, but there are work-arounds for that.

Probably would have to get an upper endoscopy to be double sure it isn't Crohn's.

Anybody know good surgeons in MA to talk to? I know this state is good for medicine.

Again, thanks! I will update you on how the appointment goes!

I agree with Summerstorm that surgery shouldn't be thought of as a last resort. It certainly shouldn't be approached lightly, but it is a good option for treatment when the disease and medications have severely impacted your quality of life.

This September I found myself in the hospital for 14 days with a flare that couldn't be controlled with the normal meds and huge doses of Prednisone. I was going the bathroom 20+ times a day and was withering away in my hospital bed. The doctors started talking Remicade, and if that didn't work, emergency surgery. Actually, surgery sounded like an okay option to me down the road when I was stronger, as I hated the idea of taking such a potent drug for life. Still, I definitely didn't want to be whisked away for some rushed surgical procedure. So, I tried one dose of Remicade which fortunately got me out of the hospital. However, it also gave me excruciating joint pain that lasted for 6 weeks. Again, this impacted my quality of life because I like to hike, rock climb and draw. I am also a park naturalist and lead hikes and nature programs for a living. With the Remicade-induced joint pain, I could do none of these activities. I could barely walk while on the stuff it hurt so bad. So, I decided surgery was my best option and had it done in November after I had a bit of time to get stronger, find a great surgeon and do lots of research.

So I would think about your quality of life, and which option gives you the best outcome. Do drugs, diet or surgery give you the best quality of life? If surgery, what type? For me, I opted for the permanent ileostomy because I felt it matched with my lifestyle best. On long rock climbs, I can use a closed-end pouch on a two-piece ostomy system. When the pouch fills up, I can swap it out for a new one mid-route and then pack out the old one. I will also be able to empty my appliance before I lead a hike or nature presentation at work and will be good to go for 2-3 hours. I also like to eat a variety of foods. I felt some of the restrictive diets I tried to control UC also negatively influenced my quality of life by taking all the joy out of eating. Now I will be able to eat most things. I also hate taking drugs with possible toxic side effects. Now I am on no medications (except for some post-surgery ibuprofen and pain meds). So for me, the permanent ileostomy sounded best, but someone else might value different things and have different ideas of what they want. It is such a personal decision.

I am now 7 weeks post op. I have had a few complications with my incision healing due to Prednisone, but other than that, am doing well. Everything with my stoma, appliance, eating and output has been going fine so far. I did get a little depressed right after the surgery, but that is fading as I am starting to look forward to the future and am beginning to realize that this ostomy appliance is not going to stop me from doing the things I love. Of course, I still have some fears, (like getting a perastomal hernia or worrying about what this little pain or that little pain is) but I just take it day by day and hope for the best. So far so good!

I also found the "Great Comebacks" and "Uncover Ostomy" websites to be inspirational as both show young, active people living life to the fullest after surgery.

My GI offered me surgery from day one as an option.  After almost 2 years of dealing with severe pancolitis, anemia, iron infusions, blood transfusions, and the lovely side effects of pred and many other drugs including Remicade while trying to hold down a full time job, I evaluated my life.  I had missed so many things - especially during the last year that I was sick, and my quality of life was horrible.  I opted for surgery rather than going to Humira or experimental drugs because I was tired of not getting to live my life. 

The decision to have surgery is yours, although with all of the other issues that you have had recently it might be worth it to get recovered from them and see how your quality of life is at that point as you are going through a lot right now that your GI system needs to recover from.  I would recommend a consultation with a surgeon so that you can get a better idea of what you might be facing if you do decide to have surgery so that you are prepared. 

I have been loving my life post surgery and am thankful that I opted for surgery instead of more drugs even with the adjustments in life post-surgery.  One question my family asked me before surgery was how would I feel if a cure was found 10 years, 1 year, or 6 months after surgery...and I said I don't care, I'm done with this colon and I want it out because it is killing me.  I still feel that way and while I didn't try every possible med or diet and in fact, didn't try many of them, I am much happier that I took the time to go through my surgeries and recoveries and am back to living my life again.

A good point was made up there how will you feel if a cure is found? In my head I was convinced I would wake up from surgery to see brian williams announcing a cure for uc! But its almost 4 years later and still no cure.

     I'm an old lady...diagnosed at 52, suffered for twelve years with UP and opted for surgery, total colectomy with end ileostomy on June 28th.

     My GI doctor would not refer me to a surgeon.  All he wanted me to do was try more and more meds.  I finally got thoroughly disgusted and had to take matters into my own hands.  I looked on the net and found my surgeon.  I made sure he had plenty of experience and had a fine reputation.  It was the best decision I ever made.  He would not do a j-pouch on me because of my age and extensive use of prednisone, but I don't mind the "bag" at all.  I have my life back.

     I would speak with a good colorectal surgeon, weigh the pros and cons and make your own decision.  I was prednisone dependent for the past two years, prior to surgery.  It gave me osteoporosis, high blood pressure and high glucose levels.  All in all, I believe it would have killed me within the next few years.  Remicade failed after my 3rd infusion and Humira did nothing even after 3 months.  Surgery is a big step, but I felt it was a life saver in my case.  The best of luck to you.  God bless.

5 weeks post takedown and most people do still feel horrible!! I recommend you visit www.j-pouch.org to see what recovery is really like. Your small intestine has to learn how to do its new job and that takes time and patience.

Sue