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Hey everyone, I'm 21and I was Diagnosed with UC back in March. Since then I have gone through nearly all the medications and their associated side effects. I am no longer taking prednisone because my blood sugar was spiking to diabetic levels, so I've been surviving on 4x Lialda, 4gm of fish oil, 1 packet of VSL #3 DS and Remicade. We have been discussing 6-MP but the benefit wouldn't be for several months and I'm not sure if I could last several more months.

I've been following a gluten/dairy free diet but I'm still going to the bathroom about 4-6 times a day. My most bothersome symptoms are abdominal pain, cramping, nausea and fatigue. I can totally deal with the extra bathroom trips but the fatigue and pain have made it impossible for me to resume playing water polo for my university. Which pretty much means my friends are going to be inaccessible once practice starts up in a month. I'm also terrified that once classes begin I will be forced to withdraw again due to worsening symptoms.

My consultation for surgery is in two weeks but my questions for you guys is has surgery improved your quality of life and how specifically did the surgery positively or negatively affect you?

Please note: I'm not knocking my doctor by any stretch, he's doing everything he can to help me get better but my body has a history of being stubborn.

 Reply posted for Leelia.

Hello Leelia - I'm 42 with UC and reaching out for information just as you did.  I was diagnosed in 2005, dealt with the arsenal of medications and now recently flared up again with disease progressing worse than before.  Drs leaving Remicade or Surgery as options.  As I've discovered reading through these many forums, I am calmer in my search for answers and information.  I am very scared.  I don't trust that "trying" another drug will work for me and considering surgery.  The many people who have shared with us on the forum have calmed my anxiety, at least enough for me to get a consult with a surgeon.  Your consult was back in March and it's been about five months, I was wondering if you decided to have the surgery?  How are you?  This is such an insane place to be, deciding to have surgery or not.  I just want to feel better and know that I am making the right decision.

 Reply posted for Leelia.

Leelia,

Looks like you've received some great feedback thus far. I was in your shoes some 8yrs ago when I was first diagnosed with UC in college and I was 23 yrs old. Unfortunately, my flare ups hindered me from partying like I wanted to but I managed somehow. I had a huge flare about a 1 1/2 after I was first diagnosed. I was still in college during my last semester. It was so intense that I had to drop all my classes during the first week and head back home. I was scheduled for surgery but started Imuran a few months prior. By the time the surgery date came around, my surgeon felt I didn't need the surgery and cancelled it because I was too well due to all the meds. I wish I would've done the surgery then. I was so young and it would've saved me like 6 yrs of pain and suffering. The one thing I can say is that I did try every drug there is and attempted all options. The surgery was my last resort when all else failed.

I had my 1st of 2 part surgery on May 15th, only 8 weeks ago and I feel great. The 2nd surgery will be scheduled at the beginning of August and I can't wait. I have a temporary ilostomy and haven't had issues with it. As a matter of fact, after surgery when they unveiled my stoma I was like, "this is it, this is what all the fuss has been about. I can handle this" and that's basically how it's been ever since. I've been able to eat what I want when I want (something I wasn't able to do before) and best of all no more pain no more symptions. 

I know exactly what you're feeling right now and it's a big decision. Hopefully, you're receiving support from family and friends and the people of this site. It was much comfort for me during the same time. I hope you're able to make an informed decision. You're the only one that can make that decision but you will know in your heart what is best for you and your body. 

Best of Luck!

Surgery or Not?Make sure you go to my first post and start reading there. Sorry I had to break it up but it said it was too long. Which it may be.

You are young and have your whole life ahead of you. Go and have the surgery now while your body can recover faster. Also, it is easier to be out for long periods of time now when you dont have a spouse and 2 kids. Somehow I have managed to go thru all this and stay married and keep a stressful full-time position. But, not everyones employer will be as understanding. Not to mention everything I have put my wife and kids thru.

One other thing. Go to a hospital or center that specializes in this type of surgery. While in the hospital I had a roommate who had his surgery at a small local hospital and they messed himup badly. They had to disconnect his pouch and put him back on an ostomy. He was leaking into his peritoneal cavity and had 2 abcesses the size of grapefruits. If he didnt get to the hosp whe he did, he could have been paralyzed when the abcesses grew into his spine and pinched it and it could have led to death. So my advice is, go to a Medical Center that does these surgeries regularly. They know what they are doing and can correct a problem if one arises.

Well, good luck. I hope all goes well for you and you can be back playing water polo soon.

Marc 

 

 Reply posted for Leelia.

I am currently in between the 2nd and 3rd (and final) surgery right now. I go back in September for the final surgery. Anyway, I don't think you can really prepare yourself for what you go thru having this surgery. Do I think it is worth it? Yes, because I should be able to have a normal life after this without having to worry about where the closest restroom is and do I have a change of clothes in case I don't make it, etc.. However, this surgery is no joke. You wake up from the first surgery not only in pain, but also having to deal with the fact that your intestine are now sticking out of your abdomen in an ostomy. It takes (or atleast took me) quite a while to get used to it. And, if your like me, you must live with it for 6 months until the 2nd surgery. If you are lucky, it is only 3 months and then you have the final surgery of reconnection. During this period between surgeries, you will definitely have to deal with body issues and feeling strange due to having the ostomy. If not, you are a much better person than I.

But, something strange also happens. You start to feel somewhat normal again. Your strength starts to come back. You aren't running for the bathroom constantly. You start to enjoy eating again, although you must be careful about what you eat so as to not cause an obstruction in the ostomy.

I haven't had the 3rd surgery yet, but i know that it will almost be like a re-birth. This past year has been an emotional and physical rollercoaster. My experience was also worsened by an inflamed gallbladder that had to come out 1 month after surgery 2, but it still takes a lot out of you in all aspects. But, sitting here with 64 days until the end, I can say that it is worth it.

TBC

Surgery or Not?Leelia,

First let me say that I am sorry you are going thru this. I was diagnosed w/ UC 9 years ago and it has been a struggle since day 1. I, too, took all the drugs from Colazal to Remicade to Cimzia and nothing seemed to work. I was on 60 mg of Prednisone a day and it was causing much havoc with my health, but for a while it did keep me somewhat normal. Then, unfortunately, it stopped working and there wasnt much left for me to do. My doctor recommended surgery, but I didnt want to hear it. So, I went to the hosp and saw a reknowned GI doctor who after 45 minutes of reviewing my history and talking to me said, Well, you have 2 choices. You could either elect to have surgery now, or wait until your colon abcesses and then forced to have the surgery under emergency situations and have the possibility of death due to excessive bleeding."

After much deliberation, 2 seconds, I chose to have the surgery at the hosp.  The GI doc set me up w/ a colorectal surgeon and the date was set for me to have the first part of a colectomy and J-pouch formation. I dont know how informed you are but basically they remove your colon and rectum in one (or two in my case since I had been on so much steroids for so long) surgery and then form a "new" colon from the ilieum which is the end part of the small intestine. They then reattach the "new" pouch to the anus and voila! you now have a new disease-free colon.

To be continued...

 Reply posted for Leelia.

I had my first small bowl resection when I was a Jr in college.  I had all the same questions you do.  For me, it became apparent that NOT having the surgery was out of the question.  In hindsight, I think I waited too long to have the surgery because I ended up with a bowel obstruction. 

I was much better after surgery!  I had my second resection in 13 yrs later in 1998 and I need to have another one next month, once we get the inflammation under control.  After my surgery in 1998, I was in remission for almost 10 years--it was wonderful!

If you do decide to have surgery, best of luck~

Lynne