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Should I Have Surgery or Not?

yes no maybeI am a 21 year old male who had been suffering severely with UC since 2009. I am on the brink of having surgery but I’m having great difficulty in making a decision.

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Should I Have Surgery or Not?

Hi, I’m a 21 year old with severe UC for 6 years now. It’s been a very stressful and painful journey since my diagnosis. I have been hospitalized countless times with flare-ups and I have been really sick. Basically Ulcerative colitis has eaten away the past 6 years of my life. I have spent the past 6 years at home, in clinics n and out and hospitals constantly. The past 6 years have revolved solely around my illness.

I haven’t been to school in years, I have never worked, drove a car or did anything a teenager has done. I was 15 when I was diagnosed, and now I’m 21, and I’ve spent the past 6 years at home in pain. I have no life. I’m defined by UC. I’ve been on so much medication throughout my disease course.

I have never stopped taking prednisone since my diagnosis.

My doctors told me to have surgery multiple times but I refused. I have pretty much taken every medicine out there for IBD and none worked exce pt for prednisone, plus I have developed reactions to the other drugs, even the so called “safe” drugs. As a last resort, I have turned to Naturopathy. I have seen some improvements taking the natural supplements and modifying my diet, but I’m worried that delaying my surgery is putting me at risk for complications. plus my parents have never supported me having surgery and they still don’t. I’m stuck I can’t make a decision. I want to have surgery, but I also want to stick with naturopathy and still have a colon. Because once I remove my colon there is no going back. And plus there is an odd chance after removing the colon I could have Crohn’s.

So should I stick with Naturopathy, or pull the plug and have surgery.

Please offer some advice and suggestions. I would like to hear from anyone in the same situation as me.

written by Mohammed

submitted in the colitis venting area




29 Responses to Should I Have Surgery or Not?

  1. Jorge March 4, 2016 at 12:19 pm #

    I am a 24 year old male and I have been dealing with UC for the past 4 years. Lot of my story sounds just like yours. I stopped going to school and work as well. I also went to a naturopath doctor. I felt some benefit from going but I was still feeling sick and with my diet being so limited I needed to try something else. I tried Remicade, Humira, and Entyvio with no relief. I was taking prednisone while on these Biologics and once I tapered off, my symptoms became worse. I had my first of my 2 step surgery August 2015 and had my take down December 2015. This was the greatest decision I have ever made. I am 100% right now and going back to school and work. It is an adjustment but the outcome is well worth it. I came into surgery weighing at 117 pounds. Now I am at 157 pounds and still gaining. I am now playing basketball and working out again. I haven’t been able to this, while not being on any medication for quite awhile. When I first was told to do this surgery a few years back, I was scared. The not knowing of what will happen or how i’ll react because like you said your not going to get your colon back. I hit rock bottom with UC this past July and I was tired of the ongoing pain. When I was told again that surgery was my last resort I was ready. I think from the outside looking in it is easy to say to not have this type of procedure. You know what your body is doing to you. The idea of not being on any medication and putting UC in the past was well worth it. The only thing I take is VSL#3. I take a couple capsules a day to prevent pouchitis and to keep a healthy flora. Hope this helps. And good luck brotha.

  2. Randy March 4, 2016 at 2:53 pm #

    I went thru the same and had a surgery in November. Lot of people told me life is better after surgery. That is not a case for every one. Neither the dr nor the other folks will tell you the hell experience after the surgery. Everyone is different and i heard there is a vaccin coming in couple years. I waited 15 years and I wish I had waited few more years for the vaccine. Once the colon is gone, there is nothing like going back. In US they do not remove portion of colon, they remove the entire colon. Be positive and think that there is life with or without surgery. Both got the complications and if someone says it is easy, it must be their luck.

    • Bev March 4, 2016 at 3:32 pm #

      A vaccine?

      What is this about? I have not heard about a vaccine. Is it more of a ‘cure’ or just another drug with side effects?

      Can anyone elaborate on this at all?

      Cheers :)

    • Lorri March 4, 2016 at 3:34 pm #

      My suggestion would be a codeine based pain reliever along with neutropathic medicine. You are at 21 still going through changes.I think within the next 2 yrs your chances of remission are good and possibly the vaccine. BOTTOM LINE IF YOU HAVE EVEN A 30% DOUBT ABOUT REMOVING YOUR COLON, THIS IS NOT THE TIME TO DO IT AND HOPEFULLY IN A YR OR 2 YOU WILL NOT NEED TOO! Add positive thinking and take full control of your disease.

      • Bev March 4, 2016 at 3:48 pm #

        What vaccine???

        Why have I not heard about this I wonder??? I am always checking for whatever is coming down the pipes in regards to UC treatments or possible cures.

        Anyone??

  3. Dan March 4, 2016 at 3:13 pm #

    I had surgery last year and it was the best decision I have ever made. I am able to do everything now with no worry that I will even have that urge to sprint to the bathroom. Surgery was long and recovery has been tough but you will never have to deal with a flare up ever again. I do not regret my decision at all. Even with the many complications that came with my surgery, I would do it again in a heartbeat.

  4. Peter March 4, 2016 at 3:17 pm #

    Well dude,

    I held off as long as I could and it was miserable. In the end my colon was so wrecked that it was never going to be viable to keep. there was no option for life with a colon for me.
    Are you just delaying the inevitable? Do you want it get so bad they take in an emergency surgery?
    So I got mine chopped out. Usual 3 stage and J pouch. I wish I done it earlier, looking back, but life (for me) isn’t a bed of roses without a colon, mate.
    I jumped out out of the frying pan into a different frying pan. But I’m not on pred, methotrexate etc…I’m not bleeding to death. I am always exhausted from pooping in the night, I’m dehydrated all the time because I don’t have colon. I’m not going to get colon cancer either though…..
    The surgery and recovery is pretty straightforward. The pain wasn’t excessive.
    Only you can make this decision.
    Good luck

    • Joe T. March 4, 2016 at 3:36 pm #

      I’m sorry you have had such a tough go of things and I truly hope your condition improves. But you are in err about not getting colon cancer. The fact is (and please check with your surgeon & GI to verify this) that even without a large intestine, you can still get bowel cancer. Especially if they kept your original rectum intact after your surgeries.

  5. Joe T. March 4, 2016 at 3:25 pm #

    Hi Mohammed,
    All I can tell you is that you should be 100% positive that you have the correct diagnosis before choosing surgery. Get as many second opinions as you can from as many different Dr’s your insurance allows. Let me explain why…

    After 6 + years of struggling both physically & mentally through the horrors of uc, ie: losing my job, home & almost my family…through all of it, I finally had the jpouch surgery in 2013. That’s after humira, remicade, asacol, 6mp, prednisone, methotrexate et al…no longer worked for me. And at the time, I was flush (no pun intended) out of options.

    Fast forward to a couple years post surgery(s)… low & behold I still haven’t improved fron the disease. I was getting pouch infections nearly every month. Even after the hell I went through with special diets, both conventional & alternative treatments, and a third surgery in 2014 to remove 6″ of constricted small bowel, I was still suffering immensely. Come to find out the reason was that I also had crohn’s. Or maybe I was misdiagnosed initially. Either way, I wish I waited a little longer before opting to take the surgical route.

    So next week, I have to go get tested for turberculosis so I can get put on a new(ish) drug called Entivio. It’ll be the 3rd biologic class drug I’ve been on. But my quality of life going forward depends on the success of of this drug.

    Now every case is different & your mileage may vary. Surgery could very well be the answer for you. But for me, man oh man do I wish I waited before chosing surgery!

    Blessings to you and yours. Hang in there.

    • Joe T. March 4, 2016 at 3:33 pm #

      I’m sorry you have had such a tough go of things and I truly hope your condition improves. But you are in err about not getting colon cancer. The fact is (and please check with your surgeon & GI to verify this) that even without a large intestine, you can still get bowel cancer. Especially if they kept your original rectum intact after your surgeries.

  6. Brad Walker March 4, 2016 at 3:40 pm #

    Absolutely have the surgery. I was diagnosed at 19 and had the surgery at 25. It is completely life changing, you talked about not going to school, not driving, etc… my final year with UC was a lot like that. I left the house 8 times that year, all trips to the doctor. Have the surgery, find a doctor who performs it laparoscopically: faster recovery, and very little scarring. I’m not gonna sugarcoat it, it will be very painful for a couple days even wit meds its gon a hurt lIke hell. That fades and the freedom you get is well worth it. If I could time travel I would tell 19 year old me to schedule surgery the very day I was diagnosed. I rode the symptom rollercoaster so long and the gradual nature in the worsening of the symptoms made me not realize how low my quality of life had become. I had my surgery, finished college, and now aside from going to the bathroom 2-4 times a day, I live a completely normal life. I recommend getting it over with.

  7. DebraK March 4, 2016 at 3:46 pm #

    Have you had a colonoscopy to determine how much of your colon is bad? If they can save some it, I would have the surgury. Do you know if your small intestine is affected?
    My daughter was diagnosed with Crohn’s when she was about 11. She was on and off Prednisone until she was 21 and had to have surgery (in the US). She had 80% of her colon removed. She had no small bowel disease. It was the best thing she did. She has diarrhea but that’s expected with only 20% of her large intestine remaining. No more symptoms of disease. She had one baby at the time and has had two more kids. She is almost 33 years old. She lives a very full life, works out, works full time as a programmer/analyst, and goes to college half time.
    I have Crohn’s in all of my bowel. I had surgury in 2001 in my illieum area because of an abscess the size of a tennis ball. I was on deaths door. The abscess was close to bursting. I was very afraid that my poor health would kill me during surgury. But it didn’t, not even close. And I had almost 10 good years before I started flaring, traveling around Europe, enjoying life.
    What you are doing now is not working for you. And I think your disease needs more than what naturopathy can help you with at this point. You deserve to live a more enjoyable life! If I was you, I would have the surgery and then clean up your diet and live a natural life. It is your choice, and I 100% understand the paralysis of your decision. But you are young! You deserve to be able to love life. Time continues on and you could be out there having so much fun!
    Best of luck in your decision, best of fun in your adventures after this is behind you…!

  8. Camille M
    Camille March 4, 2016 at 4:26 pm #

    Please get a second and third opinion from doctors from different med schools. They often approach treatments a little differently and sometimes a small difference in treatment can make a big difference in your health. I would suggest going to a med school where they do a lot of research in ulcerative colitis I know the University of Chicago was one of those but I don’t know where you’re located. Best of luck to you. I hope you get your life back soon!

  9. Paul March 4, 2016 at 5:03 pm #

    Have you tied the specific carbohydrate diet that Adam has talked about so many times on this wonderful website?

    You need to look at different alternatives before you make such a drastic declining. For me, having my colon removed is not an option!

  10. Candi Martin March 4, 2016 at 6:07 pm #

    I can just tell you my experience. I had UC then Crohns colitis. So painful and so many meds, I couldn’t even leave the house except for the Doctors. Had the surgery, when they got in they found out my colon and rectum were so diseased that they removed them both. That was 3 months ago. Yes I had pain after the surgery and am still adjusting to wearing a ostomy bag. BUT I am now out and about, slowly but getting stronger every day. They say it will take a year to heal completely. I have very little pain and am on NO meds. I had no choice and no quality of life. Compared to 3 months ago, much better, can visit friends, go to dinner (still very cautious about what I eat) and shop for myself now. It is for sure an adjustment for life. It is your decision and you have to be comfortable with it. Good luck to you. My suggestion is to go YouTube and check out the videos on colostomy bags. Most of them are done by young people that are into all kinds of activities.

  11. Jennifer B March 4, 2016 at 7:23 pm #

    Last April I had a MR Enterography done, I’m almost positive that is what it was called, it’s basically a MRI. They took photos of my digestive tract to rule out Crohns. We knew it was UC because of years of colonoscopies but my doctor wanted to rule out the Crohns because we started discussing the operation and she said that if my small intestine was affected then out the window goes the Jpouch. I will tell you that it was the most unpleasant hour of my life. The nurse gave me 3 huge bottles of barium (same stuff Curious George had to drink when he went to the hospital for an X-Ray) and I looked at her like she was freaking crazy and explained that there was no way I was going to be able to hold that in without exploding something terrible. I used the bathroom as much as I could before it was time and I just mentally focused on my breathing and it was the longest hour of my life. Luckily it was done without “incident” and the good news is that my small intestine was fine. You NEED to do something like that if not the same test because if your small intestine is affected then you will have nothing but problems with a Jpouch and you will probably end up with a permanent bag after all you have gone through. My doctor is still pushing the operation but I am also extremely hesitant because as you say, once it’s gone it’s gone. Good luck to you!

    • DebraK March 5, 2016 at 8:25 am #

      Jennifer, if you ever have this test done again, request a Valium. After I took one, the three bottles of yuk went down very easy–I didn’t have a care in the world. In fact, I got them down faster than I needed to. And the procedure was easy, too.

  12. Ella March 4, 2016 at 10:17 pm #

    Please read about UC. Doctor from Aystralia believes that this disease is caused by bacteria. He successfully treats it with antibiotics. My friend who was considering surgery tried his treatment. He is in remission and colonoscopy was great! All healed. Please do more research, get second opinion, change your diet. Try liquid diets to let intestines to heal. Good luck snd feel better

  13. Jo March 5, 2016 at 6:51 am #

    Hi Mohammed,
    I agree with others that you need to get a second or even a third opinion from a reputable G.I. Although my insurance did not pay for me to go to the mayo clinic, I paid about $800 out-of-pocket and it was worth it for a second opinion.
    I too have been through all the typical recommended meds for UC, and became prednisone dependent for over five years. But I am 64 years old, and I made my decision due to my body’s inability to heal itself without prednisone. The prednisone caused irreversible bone damage, damage to my eyes, and decreased my overall health.
    I encourage you to seriously use the SCD diet for many months, use your naturopath also for many months, find a way to get some physical exercise to improve your overall health, get as many tests as possible for your bone density, and other test that others have suggested. If you can just remove a portion of your colon and not have a pouch that may also be a possibility.
    Some of the things you may be needing are expensive, but if your parents don’t want you to have surgery you can push to have them pay for these things, cook the SCD recommended foods, and support you in counseling, physical therapy, etc.
    I made a decision to have a complete collectomy due to ending up in the hospital for 80 days over the past year and a half, and never completely healing without constant prednisone. I did everything I thought was possible so I would go into this surgery without regrets.
    if at some point you’ve seriously tried everything, yet your body just won’t heal you may be ready for surgery. You will need the support of your physicians, and the homeopath to help you make that decision if your parents won’t support you.
    This is a very difficult decision to make but as you and others have mentioned it is permanent, there’s no going back once you’ve made that choice. There are pros and cons to the decision to go forward, but in the end it is your life, your body, your decision. Make it as wisely as possible.

  14. Natalie March 6, 2016 at 2:57 pm #

    Hi Bev!

    It’s been a long time since we communicated! I found a more detailed link for that vaccine…http://crohnsmapvaccine.com/map_test/ It sure sounds promising. I thought you might like to know that I had my 2nd colonosopy done this past Thursday. My GI doctor told me that everything looked good! He said that everything, at the present time, is healed and I have no inflammation! I certainly have you to thank for my good health. If I was still taking Lialda, I bet I would have never received such great news. Thank you once again Bev. I am so very glad I took your advice!!! You’re the greatest!!

  15. Natalie March 7, 2016 at 7:00 am #

    Hey Bev!

    It’s been a long time since we’ve communicated. You had some questions regarding the new vaccine for UC. I found the following link online which goes a little more into detail than the link you received. Here it is: http://crohnsmapvaccine.com/faq/will-the-vaccine-help-ulcerative-colitis/

    Also, I wanted you to know that I had my 2nd colonoscopy this past Thursday. My GI doctor said that everything, at the present time, looked healed and I didn’t have any inflammation. I guess I have you to thank Bev. If I hadn’t taken your advice, I probably wouldn’t have had such good results. Thanks again Bev!!!

    • Bev March 8, 2016 at 10:25 am #

      Natalie Natalie Natalie!

      First, thank you for the link.

      Second, and the VERY best part, that is the most wonderful fabulous fantastic news!!

      Thank goodness for this site, for probiotics and L-glutamine…and thank goodness for YOU Natalie!!

      You are THE BEST!!!!

      Again, thank you for the link on the vaccine and for letting us know how you are doing :)

  16. Sana g March 18, 2016 at 11:38 am #

    Hi Mohammed I am in the same place but having done so much research and being 30 I think surgery is the way forward you have to totally sure and get lots of advice I know how frustrating it can be your whole life seems upside down as no medications have responded to my body I am seeing a surgeon on Monday I wish u all the best

  17. Candi Martin March 19, 2016 at 6:41 am #

    Sang good luck with the surgeon, I had the surgery 4 months ago and getting my life back,yes a little different life but, going out without pain, getting up without pain, driving myself without pain, is better..went to movie last night and dinner, no pain, yes had to empty ostomy bag once during that time but no pain, even had a glass of wine. Again good luck..

  18. Cathy March 19, 2016 at 9:53 am #

    My advice is the SCD diet written by Elaine Gotschall Stop The Vicious Cycle. It takes time and i mean years of ups and downs but always getting better and finally it goes away after about 5 years for me….no more bread or any starch…just broth from meat is the only thing I could tolerate for weeks. Yes you get thin but stay strong with I.V.s from hospital until you are strong on your own.and then you can eat what she says only.

    Good luck and God bless you..

  19. Rico April 1, 2016 at 4:13 pm #

    Do it !!!! I’m living a normal life !!!
    Best disision I ever made been almost 4 years

  20. Tdub April 1, 2016 at 11:10 pm #

    Hey Mohammed,

    Boy, do I ever feel your pain. This disease f*#(*king sucks. I’ll tell you a little about myself quickly before I give you my personal advice.

    I got diagnosed in 2012 and by May it will be 4 years now. I can’t believe it, and by now I thought I’d have totally overcome this disease and become a “normal” human being again like the majority, but unfortunately I feel as though I’m right back to square one. Sick, frustrated, and socially limited.

    I started by throwing my prescription for meds in the garbage. I knew there were better answers out there and I could get through this with alternative methods, so I took the Specific Carb Diet and found much success. But you know what? It only takes one little slip up for this shitty (no pun intended) disease and you can end up in a fu*(&(ing hospital bed again. Year and a half and I was GOLD on this diet. Had perfect bowel movements, no blood and 1 to 2 tops bms a day! I felt on top of it and like I accomplished so much! But hey, guess what? I decided to try something new with my diet. It was packaged frozen Acai berries. I got so confident I said to myself “no need to read the label….this has got to be 100% frozen Acai berries. But guess what? They had sugar and soy, and those are two things I CAN NO tolerate. So in no time I find myself in the emergency and then kicked out a couple days later on my first string of pred. I didn’t find out until I got back home that those damn berries contained those ingredients.

    Ever since taking those drugs and having them ram that anal probe up my butt, I don’t think I’ve ever been the same. You know what I think the the western medicine hospital system does for us IBD sufferers? I think they just end up making us worse. On a side note, I just did research on colonoscopies and how bloody dangerous and damaging they can be to your gut flora and the walls. Just think of this, your walls are already bleeding and damaged and then they ram that thing up there, scraping and pressing inside, then give you a ring of drugs that just suppress your immunity and make you feel sicker! This is supposed to be state of the art medical methods? What a joke.

    Anyhow, I’ve never been the same since. The SCD worked on and off and I ended up MUCH more sensitive to foods. But what do you expect when you ram stuff up your butt and take extremely toxic drugs to suppress the immunity. Ruined gut flora and suppressed immunity will back fire on ya! Right now I’m contemplating getting it cut out, because I’ve been so miserable and frustrated cooking all the time and preparing my meals. Is it all worth it? It’s taken joy away from my relationships, my child,…..I’m really at the mercy of this fu*(*ing piece of shI*t colon.

    I’ll give you my personal advice and please, take it as a grain of salt. I’m going to do whatever it takes to not get my colon removed, but if it comes to the point where nothing is working anymore and I think I’ve tried everything imaginable, I might consider it. My advice to you is to try GAPS diet. It’s the one diet that has saved me from making that last move of cutting it. This one is SOO sophisticated compared to the SCD. It takes you through stages. I would first recommend getting the official book with all the info and then get this awesome holy cook book that I follow.

    https://www.amazon.ca/Heal-Your-Gut-Cookbook-Nutrient-Dense/dp/1603585613/ref=sr_1_1?ie=UTF8&qid=1459577047&sr=8-1&keywords=gaps+cooking

    You can get it at Amazon. I can get through stage 1 and stage 2 fine with perfect stools and bloody hell, I actually get CONSTIPATED!

    For some reason I can’t handle egg whites…..I used to handle them fine. That’s the f*(cked up thing about this disease. You can handle something sometimes and then all of a sudden you can’t handle it anymore. For instance, usually I have dates as a rare treat. Usually it screws me over after, but for some reason I had NO FLARES, so I kept eating them like I was the cookie monster eating cookies. For the last 2 weeks I’ve been fine until now…..bloody mess! So, it’s back to being serious again.

    I’ve been through so many trial and errors doing diet methods, and I tell ya what, It’s starting to drive me totally crazy…..It’s so much work when you have a job and a kid to take care of. Since you live with your parents and you bare little responsibilities, I would totally take advantage of that! You can get lots of sleep and concentrate on you health! Lucky you….I don’t even get that. I get stress everyday from kid, wife and all the rest. Count your lucky stars and try the Gaps, and follow that cook book if you get it. Follow it to a tee! I think you’ll get success from it.

    Cheers

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