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Should I have surgery??

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Ulcerative Colitis
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Posted 4/17/2014 12:27 AM (GMT 0)
So, here's my story. I've been fighting this disease for going on eight months. Not long compared to some, I know. But I also know I don't want to spend the rest of my life in this shape. When I was first diagnosed, it was the worst of the worst. I literally laid in a hospital bed screaming out in pain, passing pure blood, 15 or so BM/day, and every other symptom that comes along with the disease. You guys know them. I'm not that bad now though. Abdominal pain, 5-7 BM, occasional bleeding, D everyday, urgency, occasional nausea on really bad days, frequent headaches and fatigue, severe bloating and gas (to the point it hurts and it's hard to breathe), fever, weakness, reflux, heartburn, back pain, joint pain, leg muscle pain. The list just goes on and on. I had a really good week the week of April 7th and I thought I was coming out of it but now I'm back to the same ole, same ole. I'm so tired of living this way. I can't work, I no longer have a social life, and it's difficult to even go to the grocery store and do the things I need to do.

My GI, as well as two different surgeons, have recommended I have the surgery. I feel like I'm giving up if I do, plus I'm afraid of all the risks. At the same time, I know this thing is NEVER going away. Do I stick it out and give the medication a better chance, and try nutrition and other natural remedies? Where do you draw the line? I'm so frustrated because I can't make up my mind! Advice please!

For those who have opted for the J-pouch, what are your feelings about your decision?
For those who have not had the surgery, but have been recommended to, why have you not?
Posted 4/17/2014 12:39 AM (GMT 0)
I'm wondering the exact same thing as you right now. I got out of the hospital on the 11th and have been wondering if its worth all these drugs they have me on (imuran, prednisone, vitamin d supplements) I've had this since I was 12, and although I've had years of remission, when it's flared its terrible.
Posted 4/17/2014 1:12 AM (GMT 0)
For as severe as your UC sounds, what are you on currently that's supposed to get you to remission? You've got a lot of meds listed for 8 months and it seems you've already got a lot of them (drugs that take a while to get up to therapeutic benefit levels) in the previous column. Are you having trouble with reactions to the meds?
Posted 4/17/2014 1:22 AM (GMT 0)
I literally laid in a hospital bed screaming out in pain, passing pure blood, 15 or so BM/day, and every other symptom that comes along with the disease. You guys know them. I'm not that bad now though. Abdominal pain, 5-7 BM, occasional bleeding, D everyday, urgency, occasional nausea on really bad days, frequent headaches and fatigue, severe bloating and gas (to the point it hurts and it's hard to breathe), fever, weakness, reflux, heartburn, back pain, joint pain, leg muscle pain.

This was me 2.5 years ago. It gets easier, trust me. In the beginning, the pain woke me up screaming and in tears. But now, it's manageable. I haven't had a bad day once I found a good regimen. You have to see what foods you can handle and what you cannot. Try to get an enema that works for you. Uceris and mesalamine enemas were my godsend but I see the enema in your past Rx.

If you can come to terms with not being 100% whole as well as physically and mentally accepting surgery, then why not if all options have been exhausted? That is my dilemma with surgery and no way has to do with what I think of others who have gotten it.

Also, I have been hospitalized about the same as you or more and had infusions 6-10, 2 pints each. I had to refuse it this time because with each one, the risks get higher and I'm trying to find alternatives.

Post Edited (katarzyna) : 4/16/2014 7:26:33 PM (GMT-6)

Posted 4/17/2014 1:30 AM (GMT 0)
I had my first surgery a little over eight months after I was diagnosed, when I was 26!

I do not regret my decision. Like you, I couldn't work and could rarely leave the house. I was on a lot of drugs, many of which had unacceptable long term effects on my health (e.g. prednisone), and my GI didn't have anything else to try. I did lots of different diets and some alternative treatments like acupuncture to no avail.

I don't see what I did as giving up because I came to realize that my suffering was not going to cause my body to heal. For a long time I thought that if I just held on and endured the pain and missing out on things I wanted to do in my life, then I would eventually be "rewarded" with remission. But for me, there was no connection between the two. I was waiting for something that would never come. The only thing I "gave up" on was the false idea that my suffering meant anything besides spending one more day in unnecessary pain. I'm a young, ambitious person, and suffering for months or years waiting for a new treatment was not acceptable to me.

I can't decide for you and I would want to know more about your med history (e.g. what happened with the Humira?) before even hazarding to give advice, but I do want to emphasize that surgery is NOT giving up. There are many things that should factor into your decision but feelings of failure should never be one of them.
Posted 4/17/2014 1:34 AM (GMT 0)
I went 5 years in a constant flare that was pure hell. Looking back now I should have had surgery much sooner but I was determined to try all the meds. When I went thru each one and they all failed, I had j pouch surgery. BEST thing I ever could have done. Life UC free is awesome.

I don't know how you feel about running through the laundry list of drugs like I did but you don't have to if you don't want to. It's a quality of life decision.

Good luck and I'll be happy to answer any questions if I can.
Posted 4/17/2014 2:22 AM (GMT 0)
Kentuckygal: In your case I would recommend surgery. Have you had C-Diff? Just wondering because of all the antibiotics you have in your signature. Levaquin is one of the broad spectrum antibiotics I was on which gave me my UC. If you haven't had C-Diff then all of those antibiotics probably made you much worse. The Acyclovir could also be making you much worse. As far as diet goes just eating healthier is not really a cure but learning which food and drink choices make you worse and eliminating those could cause your UC to be much better. But, it is not an easy path. Sometimes it's like going to college to do all the work to try figuring out which foods are not helping your UC. It can be real hard work and could take weeks or months to figure out.
Posted 4/17/2014 3:27 AM (GMT 0)
Gal88,

I'm new to this forum my flares haven't been bad compare to what others here endure or have endured. However I'have been having this flare since last October but It being better at times. So it is bearable for me now.

When I have first started to read here I was so sure I was ready to go through every possible meds and trick before going through a surgery.

Now I have changed my mind about it and made my plans about what would I do if ever I started to get very difficult long flares. I'm so glad for the opportunity I have got to think a head.

I fell that I would pick the surgery option before having to take all sort of meds that could affect other parts of my body.

Why would I do that ? Because it is enough to have a sick colon and I would not want to jeopardize my health any further. Because, I fell surgery would be easier to deal with physically and mentally if I don't screw around with my health before getting a surgery.

You know, like investing in a bad relationship, the more you go one with it, the more it's painful to end it, because it harder to end something you fell you have sacrifice a lot for. Often, you just hang in there because you are scared that you may give-up just before things were going to get resolved.

Kind of funny to compare my colon to a bad relationship... But, it is how I fell. If my colon starts to give me bad times, it is kind of a bad relation with it. And I would not want to hurt other parts of my body for it... Once you start that cycle when do you break it ?

Just maybe, before making your decision you should set your limits to what is acceptable for you. If these limits are cross then go one with the surgery.

Setting our limits in life is not easy (any kind of limits). Therefore I would advice you to seek some help in order to do so.

It is my next step clearly setting my own personal limits about this disease. If it ever come to a point that my UC gets worse I'll be better prepared to make decision.

Post Edited (Chantrelle99) : 4/16/2014 9:33:47 PM (GMT-6)

Posted 4/17/2014 1:36 PM (GMT 0)
That's a really good analogy. Some people just fall in love with their colons and are willing to put up with all sorts of abuse the darn thing gives them.
Posted 4/23/2014 10:15 PM (GMT 0)
Sorry it's taken so long to reply. I had another wonderful visit to the hospital for 5 days. GI is worried about my bowels rupturing so I think push has come to shove and the decision has been made. I already decided to have the surgery in my mind but this last visit kinda put the icing on the cake. I'm tired of being sick and poked with needles and poisoning my body with all of these meds.

Spartan, I'm on Uceris and Apriso and recently quit the Humira in preparation for surgery. A lot of the meds I've taken were while I was in the hospital to get everything under control.

GaryLouisville, I haven't had C-diff. Been testing numerous times.

Cantrelle, I really like that analogy. :) Thanks!

I could still use some advice and whatnot so feel free to continue to reply. I need all the support I can get at the moment.
Posted 4/23/2014 10:40 PM (GMT 0)
Sorry for your recent bad news. Will you be going for a j pouch? The surgeries are tough but the end result is so worth it. I was very scared facing surgery but it has truly been a blessing in disguise. Any questions, please feel free to ask.
Posted 4/23/2014 11:34 PM (GMT 0)
Yes, I'll be getting the j-pouch. The biggest worry I've had is ending up with a permanent bag. It terrifies me but at this point it's more important to get back to good health. I want my life back!!

What is the worst part about the surgery? How long did you have UC and how severe was it?

I'd really love to hear the pros and cons of the j-pouch and why people are deciding to have the surgery, rather than not. Thanks in advance!
Posted 4/23/2014 11:46 PM (GMT 0)
I suggest you go over to www.j-pouch.org many many there have had the surgery.
Join the general discussion group.
But don't get scared by what you see.
My son has a pouch and is fine,14 years now.

I suggest you learn as much as possible about the surgery,also have a patient advocate,that knows

somewhat about UC and the surgery.
Tell them Glenns Dad sent you,the old timers there know me well.
Old Mike

Posted 4/24/2014 12:04 AM (GMT 0)
Gal88,

Sorry about your last lousy visit at the hospital. I would had hope that you had more time to make your mind up or to fell comfortable with your decision. Not that isn't the right choice just because it'sn't an easy choice to make.

Do you have support at home for the before and after ?

I don't know how you fell about getting some out side help (like counseling) or if you can afford it. But, it is something I do when I have big stuff to deal with in my life. I mean by big stuff, loosing someone very close or things like that. I'm not talking about laying on a Freudian srink's leather coach for years ;) sometimes 2 or 3 visits can be very helpfull.

It might not be the kind of thing you are comfortable with, that is fine too ;)

I'm sure there are people on this forum that are going to be able to answer your questions about surgery it self, before, during and after.
Posted 4/24/2014 12:11 AM (GMT 0)

KentuckyGal88 said...
Yes, I'll be getting the j-pouch. The biggest worry I've had is ending up with a permanent bag. It terrifies me but at this point it's more important to get back to good health. I want my life back!!

What is the worst part about the surgery? How long did you have UC and how severe was it?

I'd really love to hear the pros and cons of the j-pouch and why people are deciding to have the surgery, rather than not. Thanks in advance!

The worst part of the surgery in my opinion was the post op pain and and just the waiting to feel good again. I did have a some issues with my stoma and that wasn't fun but I made it thru. I had UC for 6 years before surgery. And those 6 years I was pretty much in a constant flare. I had severe pancolitis.

I honestly have more pros than cons with my j pouch. The pros are eating what I want, no urgency, no pain, no meds, and just being able to participate in life again. Some cons are I still have chronic anemia even though I have no bleeding (I'm not absorbing iron for some reason...could be surgery related or not...no one seems to know), I still have to get up sometimes at night to use the bathroom. That's really the only things I can complain about.

I exhausted all the meds. I had no choices left. It was either have surgery or my colon would have probably perforated. My surgeon told me it was really bad upon removal....sections of it were worn thin. I'm glad I got in there when I did.
Posted 4/24/2014 11:20 AM (GMT 0)
Good luck, Kentucky Gal!!! You will be amazed at how much better you feel, despite post-op pain. Which is horrible, indeed. But you do get pain meds- don't be hesitant to take them once you're home. I'm still using mine & it's been 10 days since my surgery. Which to me seems like a long time, but it's not- what caught me off guard was just how major a surgery this type of thing is, how long the recovery period is. Be patient, don't push yourself. Keep posting, let us know how things go. And Chantrelle- I LOVE your "bad relationship" analogy, it's perfect~!!!!!
Posted 4/24/2014 2:42 PM (GMT 0)
I would rather get surgery than having all these drugs if I know for sure that I have ulcerative colitis. Mine is indermined colitis and GI wants to see how it progresses so no choice than being on medicine.
Posted 4/24/2014 3:26 PM (GMT 0)
I would recommend reading up on a few blogs where people describe the process of surgery, the aftermath, and such. One such blog (and there are many others) is:

http://ronnielee-fightingforit.blogspot.com/2012/08/coming-to-terms.html

Good luck, and here's to giving uc the boot! Good riddance uc!
Posted 4/26/2014 6:44 PM (GMT 0)
Thank you all for your replies. Very helpful. I'm on my way to Ohio now. My GI and surgeon don't want me to wait two more weeks for my originally scheduled surgery date. They said I'm high risk for bowel perforation, which freaks me out, so at this point the decision is out of my hands. It's just confusing because I actually feel ok. Almost good. Very little pain, but I'm on pain meds though. But they're the experts and they seem really worried so I'm going to trust God and their professional opinions. I've been watching this one girl's video blog. On Facebook her name is Ostomy Awareness. If anyone is considering surgery I highly recommend watching her videos. She's also on YouTube. As I'm typing, I can't see everyone's replies like I usually can when I'm on my computer (on my cell at the moment) but I recall someone asking if I have support and I do. The best support system I could ask for. I don't know what I would do without them. I've been seeing a therapist for a couple months now. Maybe 4-5 visits. That's helped a lot. I suggest EVERYONE go for at least a few sessions. Even if you think you don't need it. If you don't think your insurance will cover it or if you don't have insurance and can't afford it, there are programs out there to help. Luckily, being I the military, I have 100% insurance, which is a major blessing through all of this.

Again, I want to thank everyone for their comments and support. It means a lot to me. I should be having surgery tomorrow so I will update when I can. God bless!
Posted 4/26/2014 7:04 PM (GMT 0)
Best of luck with your surgery! I know things will go well! My colon perforated as well so I know how you are feeling.

Post when you feel up to it after surgery!

Sending you happy, healing UC free thoughts!
Posted 4/26/2014 7:09 PM (GMT 0)
Good luck tomorrow! It is miles better to do the surgery now than wait for a bowel perf, so you are doing the right thing.

I didn't start going to therapy until after my first surgery but I did probably ~15 sessions during the year when I had all my operations and it was a huge help. I totally agree with you :-)
Posted 4/26/2014 10:02 PM (GMT 0)
Best wishes for a speedy recovery!
Posted 4/28/2014 7:58 PM (GMT 0)
I believe the fact that you seemed really well prepared and at peace with it will help you. We are so much stronger when we are mentally ready.

I'm the one who ask about support ;) Glad to hear you have good support.

Give us some news what you can. And Yes, have a speedy recovery
Posted 4/28/2014 8:44 PM (GMT 0)
Best wishes for a successful surgery and a quick recovery!
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