Surgery for a Young, Active Guy?

Jake S fullIntro:

I was diagnosed 6 years ago with UC and it has been a roller-coaster since that time, to say the least. I have had at least 4 colonoscopies during this time, with my most recent in December, 2013 (which showed “life-threatening inflammation” in which they could not find any “normal tissue” in my colon). I am currently facing a dilemma in which I must choose another (potentially dangerous) maintenance med, or get a FULL colectomy due to the consistent inflammation throughout the ENTIRE colon each time I flare (it is never just a small section; it always covers the entire length of the bowel).

Some more about me:

I am a 27 year old Kentucky man (boy at heart) that loves the outdoors (hunting/fishing), crossfit, running, golfing and basically anything I can do outside that involves toys :) or physical activity. I have a Master’s Degree in Public Administration and currently work as a freight broker. I don’t like to let anything slow me down; and I am not going to start now when I am just beginning my professional and adult life (I want children, money, toys, activities…the whole 9 yards)!!

Symptoms:

Blood/cramping/pain/nausea/fatigue/constant “urge to go”/multiple (up to 20) BMs a day (when not controlled by pred)

Surgery for a Young, Active Guy?

I will try to keep this short and sweet, and hit the “high notes” throughout my 6 year battle with UC and finish with a few questions for you experienced and new UC’ers out there, as well as offer my help/support for those recently diagnosed.

I was diagnosed 6 years ago during my last year of undergraduate work at the University of Kentucky. I didn’t think much of it at the time, because honestly, I just didn’t care all that much. I was too stubborn to realize the long-term impact this disease would have on my life, and I was even hesitant to call it a disease at first. I took pred to get my initial flare under control, continued with my life of partying, drinking (not too much, but just enough for a good college student :) ) and planning my future and started on a 5ASA as a maintenance med. This helped for a while, but then I was diagnosed with extremely painful pancreatitis (my first of 4 bouts, currently). I was not drinking or eating bad at the time, so they believed it to be linked with this medication, but couldn’t tie the two directly together.

As I got this flare under control, got the pancreatitis taken care of and continued to live my life (start a career and grad school) I then switched to Imuran which worked for about 3 months until, again, I got a terrible bout of pancreatitis which was directly linked to this drug (they tested this during my hospital stay and confirmed the link).

After this I was switched to Remicade (very reluctantly at first), and I hated it, but it worked. I don’t know about those of you who have had these (insanely expensive) treatments, but I felt rundown, tired, especially fatigued a few days after the infusion and it eventually stopped working. I went to the Cleveland Clinic following this failure and went on pred yet again, as I was fast approaching my wedding and honeymoon. The pred did the trick, as it usually does, but with all the annoying, painful and irritating side-effects.

Eventually I decided to try a mild anti-anxiety medication because I had heard these were effective in calming down the nervous system, hence calming down the stomach irritation that comes with stress and anxiety. This is important to note as I and others consider myself a nervous person, generally, so I really think stress is a factor (that is downplayed by GI doctors, as there is no “scientific evidence” to fully back this theory (yet)) and needs to be monitored closely. These meds, and no GI meds whatsoever during this time kept me symptom free for almost two years! That was until my wife and I decided to move and I completely changed my career course, and I have no doubt that this stress started my most recent flare (and the most serious to date).

All of this (obviously a very shortened version) has led me to the dilemma I currently face: I am on 20mg of pred currently, and I hate it but it is buying me time to choose between the only two options I really have left to control my symptoms. These options are Humira and full colectomy. I have kicked this around with my wife and family, and it is a very scary situation. I really don’t know whether I want to go down the road of Humira facing potentially dangerous side-effects, huge costs, missing work intermittently (as I just started a new career and have already been out over 30 days in less than 90 days of employment due to a 17 day hospital stay a few weeks ago), and the good possibility that the med will stop working at some point anyway thus facing pred again, more work missed due to another hospitalization and multiple doctor visits, etc. (**I do try to be positive, but every med I have taken to this point has stopped working or made me very sick**).
This is why I am seriously considering the surgery as I currently do not yet have children, do not have my own accounts to manage/babysit/improve at work yet as I am still training, I am not in school and my responsibilities are probably more limited now then they are going to be in the future. I am concerned about the issues of surgery itself, those normally associated with major surgery such as impotency, the fact that I may have to use a bag forever if the J-pouch fails, dangers of the surgery, recovery time, multiple BM’s a day, etc. but after reading many helpful posts on this site it seems people really are enjoying life again following recovery/surgery.

So what do you all think?

My most recent hospital visit (just got out about 3 weeks ago) left me battling pancreatitis (again), c-diff and a MAJOR flare of my UC (in which a colonoscopy showed “life-threatening” inflammation) and the only thing stopping me going back into a flare is the pred (which I hate more than anything!) Did I mention that I tried apriso (another mesalimine) and that is what caused my pancreatitis which sent me to the hospital and managed to also contract c-diff during that time? The docs now believe that something in these medications cause an allergic reaction (essentially), hence cutting down my options of meds to choose from, greatly. I am leaning towards the surgery, and meet with a highly-regarded co-rectal surgeon in just over a week. My medication options are limited to say the least, and I feel like even if I have to keep the bag and something goes wrong with the internal pouch it still may be a better choice in the long-run for m any reasons.

My experiences with UC have taught me some amazing life lessons at a very early age, and I really haven’t let it slow me down at all (until the most recent bout, probably due to the severity and the fact that it came on with two other major problems at the same time). Problems at work, stress from bosses, etc. are nothing/small potatoes when I have faced life-threatening problems created by UC and have lived with/currently live with the pain and problems caused by this disease (points the normal BS of life into a good prospective). I no longer drink (I stopped pretty quickly after the initial diagnoses and after getting out the college atmosphere) and I have started eating gluten free as well to see if it helps, even though I do not technically have Celiac’s Disease. I would be happy to share my experiences to anyone who wants to listen/looking for some support as I have been through the ringer multiple times with this disease (way too much to keep typing about i n this story), and I hope that someone can tell me about their experience with surgery as I am just starting life, still want to have children, still want to remain extremely active (cross-fitter (not recently), runner (not recently), broker (fun, but stressful), hunter and fisherman) and would hate to be slowed down!

Medications:

Pred :( (currently, and I hate it, but it works when your life is on the line, so to say)

Pain meds as needed (also hate them, but they help when you need them)

(I have tried EVERY 5ASA/mesalamine available and Imuran (all of which gave me pancreatitis!!). I also flared on Remicade within a year)

I have used every drug available to treat UC (including some anti-anxiety meds (which really helped for a long period of time, and I still believe them to be useful!), with the exception of Humira and I am not sure that I want to start down that road again

written by Jake

submitted in the colitis venting area




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

25 Responses to Surgery for a Young, Active Guy?

  1. Adam
    Adam January 31, 2014 at 9:06 pm #

    Jake,

    I’m sending you over a free copy of the ebooks I’ve written right away.

    You need to read them because there is just way too much in common with your story as there was with mine.

    In a nutshell, it came down to me changing my diet. Simple as that, and as you know, nearly NO doctors will mention this to you. But of course it helped me 5 years ago, and it has done the same for thousands around the globe.

    Now, on a different note, you have many surgery related questions. I’ve never had surgery, but I can tell you one big thing. Of the numerous UC’ers I’ve met (in real life, not over the stinkin internet), ALL are very happy to have made the decision. It’s a big decision, but one they were all happy to have made.

    In the end, no matter what decisions you make, you will FOR SURE have your whole life ahead of you. It sounds clear the medications are just not working for you. Same was the deal for me. And that’s fine. There are alternatives to medications. Diet changes or surgery are just some of them.

    I wish you the best and KEEP YOUR SPIRIT UP.

    – Adam

  2. Jennifer Berman January 31, 2014 at 9:27 pm #

    Hi Jake, I’ve been battaling UC for about 4 years now. I too have my entire colon affected. Medications for me have not worked except for Prednisone but after I stop taking it the symptoms reappear immediately. It’s late at night and I don’t have my meds near me so please forgive all the misspellings. I tried Humira and it did nothing, now I’m on Simponi (also a self-injecting but it’s once a month) and my doctor also prescribed another pill (mercaptor-something) that I take daily that is supposed to help the simponi work better. I don’t see a difference. I also use to take Asacol and then was switched to Apriso (both did nothing) but I just started take Lialda and I have noticed a slight decrease in my ‘activity’ which was 12+ times a day but I also changed my diet so it could be that or a mixture of that and my meds (who the hell knows). From what I’ve been reading everyone seems to have different reactions to different medications. I don’t have any info on surgeries but if things don’t start to improve soon it appears to be an ever increasing possibility in my near future and I need to start researching them. Hopefully something will eventually work for all of us and I hope you find some kind of lasting relief. Good luck to you!

  3. Tom
    Tom February 1, 2014 at 3:00 am #

    Jake

    I had surgery last year and I’m very happy with my decision. I’m not having the jpouch as I’m happy with the bag and in my eyes is too risky for me.

    Feel free to drop me an email at tommalone8 (at)gmail.com if you want to chat

    Tom

  4. k February 1, 2014 at 12:07 pm #

    Jake, you are obviously up on what the future holds at this point in the medical/surgical world for you – either more of the same or surgery for an ileostomy or a j pouch.

    My experience is decades old now, but I’ll share it for what it is worth. In January 1975 I was finally correctly diagnosed with uc and immediately hospitalized. My colon perforated three day later and they took it out that afternoon. So for 39 years I have had an ileostomy. It gave me my life back. I still consider it a miracle of surgical skills and medical devices.

    In this day of the internet and YouTube, there are various informative sites out there. I now realize that in a way I had it easy, for I did not have to make the decision for surgery, it was made for me. I just had to move forward from that point.

  5. J February 1, 2014 at 12:51 pm #

    Hey Jake,

    Like you, I’m young (30 years old) and active (golf, basketball, exercise, etc.). After being diagnosed in Jan. 2012, I had to have surgery in March 2013 and I now have an ileostomy and bag.

    While I can’t offer an opinion about the J-pouch, my ostomy and the bag really aren’t an issue for me when I’m out playing golf or exercising. During hot weather my skin barrier might start to peel off a bit, but it hasn’t ever really caused a problem and it will usually adhere to my skin again once my skin dries.

    Best wishes with whatever route you choose!

  6. shelly in maine February 1, 2014 at 3:25 pm #

    Hey Jake…just another add to Adam’s and other’s…read, read, read…knowledge I power no matter the route yu take. I, like Adam, have not had surgery(knock on wood!), I am a UC lifer-45 and officially diagnosed by 15 and now Med free 2 1/2 years just managing….been through all the meds and am now allergic and intolerant to all.

    I encourage you to read input from natural remedies, to Med/humira rewiews/comments to surgery stories (like Curtis, Blake, Emmie, Baker, etc..great deailed stories!)on this site from us Real UC’ers. :-)

    This is a great support system…keep us posted.
    Wishing you all the best toward better health, Shelly

  7. Jake S
    Jake S. February 2, 2014 at 1:13 pm #

    From Adam all the way down to Shelly…your feedback has been extremely uplifting and useful…as we all know, this can sometimes be a lonely disease due to lack of education and the symptoms associated with it. Thankfully I have support of other fighters like you all, as well as my family (especially my wife) so that I can make the best possible decision given the information at hand. As we know, medicine is not an exact science, but I do know that I can control what and what I do not put in my body, so I will continue to take diet seriously, and follow up with you all after I meet with the GI doctor and surgeon TOMORROW!

    All of our stories are different, but so similar in many ways, which makes this a great outlet…I just want to say thanks in advance for you all taking time out of your day to read my story and respond with helpful information and encouragement…I think the surgery may be in the near future, but I am really focusing on diet and natural remedies in the meantime (with not much success right now unfortunately :( ), but that hasn’t stopped me from trying!

  8. Sharon Ryan February 3, 2014 at 2:27 am #

    Hi Jake,

    I had surgery last year and honestly it’s the best thing I ever did.

    No amount of medication worked for me , so in the end I had no choice.
    But it worked out for the best for me.

    I now have an ileostomy but I won’t be having the J Pouch surgery.

    The very best of luck in your decision.

    Sharon

  9. Jake S
    Jake S. February 3, 2014 at 3:04 am #

    Thank you Sharon! I will keep that in mind today when I meet with the surgeon…at this point the pred is even becoming ineffective and I have never had to deal with that…kind of alarming! As soon as I start to taper, things get bad again so hopefully a solution or at least some relief is around the corner!

  10. Lisa OH
    Lisa February 3, 2014 at 7:23 pm #

    Hi jake. I was diagnosed w/UC dec 2011 and by feb 2012 my colon became toxic so had to get a total colectomy. I had an ostomy bag for abt 10 mos (which actually was not bad) total before all jpouch surgeries were completed dec 2012. I’m happy with the jpouch, and although it was a rough couple of years, it’s totally worth it for me. Good luck!!

    • Marq Rich
      Marq Richardson March 17, 2014 at 7:23 am #

      10 months,, ? mine was don in 3 months

  11. Tim B
    Tim B. February 7, 2014 at 7:47 am #

    I would make some dietary changes before going through with either of your options. Most people have a lot of success with the GAPS diet. I currently follow the Bland diet which has done wonders for me. I am 31 and got diagnosed in February 2013 and things were trending badly for me until making major lifestyle changes (i.e. no more alcohol, caffeine, greasy foods, spicy foods). Also, you might look into Budesonide which is an alternative to pred which targets Crohn’s/Colitis symptoms and is safe enough to take as a maintenance drug. Long-term side effects are akin to a sugar pill. Its more expensive that pred, but worth it in my opinion.

  12. Ramona February 10, 2014 at 10:50 pm #

    I was diagnosed with uc in the mid 70’s (I was 13-14 years) had my colon removed about six years ago and have pouch, I am now 53. What would I do differently looking back, get tested for food intolerances. I did thus last year, it is a expensive blood test done through a nutrictionist. I was eating, all my life, stuff that was making me sick ie sinus infections and inflammation. I lost 10 pounds by doing nothing but cutting out the things I the red on my list. Surgery or no, I had surgery as a means of preventing colon cancer because the biopsies were coming back with changing in the cells. My experience with the bag was a personal nightmare. Maybe it was location and the fact that the stoma didn’t appear to have the right “height”, but I had major leakage and frustration. I had decide to go with the j pouch and worried for no reason that I went through one surgery and the second wasn’t going to work. I feel this was a good decision for me, but I have had pouchitis a few times which was treated with antibiotics. I still have to use the bathroom often, but without the pain and medicines. Diarrhea crops up often but staying off the alcohol or at least minimizing my intake helps. I watch the roughage but still enjoy popcorn once in a while. I do have to take vitamins and still drink ensure once in a while. None of the choices are great be I felt I had to make a decision to afford me a longer life. So as a final note, my acceptance that my life isn’t as “normal” as the rest of my family and friends helped, this and looking beyond myself and seeing what others suffer allows me to be very happy. I had a very supportive husband and adult children ( and grandchildren) who make all the crap and inconveniences worth it. I didn’t lead a big time outdoor life, but do have to give a lot of thought about how long I will be away from a bathroom or maybe I should hold of lunch until later scernios. Sorry for the bad spelling, I wish you the best and hope you reach a decision that brings you a better life and you stay healthy enough, both physically and mentally, that none of this overwhelms you.

  13. Jake S
    Jake S February 16, 2014 at 9:07 am #

    Ramona,

    Thank you for the feedback. It is good to hear the flip side of the procedure and some additional ideas/thoughts to consider that show the not always perfect side of going through something like this. I can also use this info as an arsenal of power when I go to have the surgery when they are considering placement of the stoma, etc. due to my activity level/at least desired activity level. I have been tested for food related allergies and both good and bad, I can pretty much eat nails and be fine ha ha. With my strange and dangerous responses to the maintenance meds and the level of the most recent flare they said I’m on a collision course for cancer, no question about it. I cross referenced this with multiple docs and got the same response essentially everywhere so here goes nothing in a few weeks! I’m praying for a good procedure and a quick recovery. If I commit to this, which I have, I won’t half-ass it so once it’s done I’ll embrace it all (not like I have a choice ha) but I just need to remember that my mental attitude is way more important than the physical that comes with the ostomy bag and j pouch. Thank you so much for your feedback!

  14. rich February 18, 2014 at 5:53 pm #

    Hi I am reading from my hospital bed, 31 yo male from the uk. 8 years of pain and my 10day stay in hospital has shown a section of my colon is missing the lining. So tommorrow my colon gets removed, I hope my life gets turned around. I plan to have J pouch but I wonder how many 30 yo who are single, no kids ect just keep the bag? peace

    • Adam
      Adam February 19, 2014 at 5:34 am #

      Hey Rich,

      Best of luck to you tomorrow (maybe today:)

      Cheers to you with a speedy recovery as well and I think no matter what decision you make, you’ll be very happy moving forward.

      -Adam

    • bev February 19, 2014 at 6:22 am #

      Hi Rich,

      Like Adam said…after this is all over, you will be happy. It’s how life works, really. We have that capacity to allow ourselves happiness no matter what. Everything is going to be just great!

      I too would like to know how many people just stay with the bag, and how they do with that?

      :)

  15. Tom
    Tom February 19, 2014 at 2:52 pm #

    Rich/Bev

    I had what was going to be op 1 of 3 last May. The plan was to have a jpouch but i was always wasn’t sure. I made the decision a month ago to stick with the bag and not risk the Jpouch. I know most people who have the Jpouch get on fine with it but it still carries a 50% risk of long term complications. I personally get on so well with the bag that, the benefits of a jpouch did not outweigh the risks. If i hated the bag and/or wasn’t informed how dangerous and difficult it is to remove a jpouch if it were to fail, then I would be opting for the Jpouch. For the past 7 months ive been having loads of trouble with blood and mucous from the rectal stump (about 15cm) which has been a major PIA literally, so can’t wait for my final op to remove it, which is happening on the 4th April.

    Also, im only 25 and have no kids yet. If i didn’t have my very supportive girlfriend, i would still not opt for the Jpouch, but that’s just me.

    Let me know if you have any more questions :)

    Tom

    • bev February 19, 2014 at 2:55 pm #

      Thanks Tom…that is awesome! I’ve heard so much about the possibility of j-pouches becoming problematic that I think I would do the same as you. I have a great husband as well, so I’m sure I’d be fine with the bag too.

      Thank you so much:)

    • shelly in maine February 19, 2014 at 7:07 pm #

      Tom,
      Great info and glad you gave us an update…I think it’s been a while and hopefully you’ll be able t ull your story all together and do another sucesful surgery post!
      Positive and healthy thoughts, Shelly

  16. shelly in maine February 19, 2014 at 7:09 pm #

    Hey Jake…hope your arts. And decisions are moving in the right direction for you. Don’t forget to keep us posted.
    Best, Shelly

  17. Jake S
    Jake S. February 22, 2014 at 5:53 am #

    Thank you Shelly!! I will keep you all posted.

    Tom, thank you for the feedback on here as well; rectal stump, what exactly is that that you were/are having to deal with? Not too familiar with that…was it a portion they left during the surgery?

    Hope you are doing well.

  18. Marq Rich
    Marq Richardson March 17, 2014 at 7:23 am #

    let me get straight to the point… surgery is the only cure… im so glad i got the j-pouch.. its been 2 years since i had the pouch and i only had 1 case of pouchitis. i think we all had or have the same symptoms but if you want them to stop and you dnt want to take no more meds i suggest the surgery.. i got back to a normal life, not worrying about wheres the nearest rest room… i go 3 times a day now.. morn, noon, and night… i dnt even wake in the middle of the night that often….i disagree with all these home remedies and probiotics crap…the bottom line is flares trigger when they want, whether your on meds or not.. ppl need to understand that these remedies are not the results of their remission… i believe remission happens on its own… every med or remicade that i took , i still had flares while on these medications… it came and went as it pleased… with this disease you can loose your job ect… cant plan events… you know what i mean.. bottom line is im perfectly back normal… med free…symptom free….. no worries….im going to make this a general message for now on and post on other ppl pages as well…any questions or comments reply to this post or if you want to talk on a personal level you can give me a call any time on mon-tue………… wed,thur,fri,sat,sun b4 330pm 347-351-7694

  19. rod w. May 19, 2014 at 5:56 pm #

    Gastroenterologist and Surgeon Dr. Warren Lichliter out of Dallas Texas did my J-pouch surgery in December 1990 for the colostomy bag and the resection to J-Pouch about 6 weeks later from what I remember. It was during a break in semesters during my college years. At the time I had wasted away to about 108 lbs at 6ft. I am 42 now, 6ft 2 and 225 lbs fit, with at least 110lbs in muscle mass as measured by a recent body composition session with a weight loss clinic. That BMI stuff is BS by the way. I’m sure you know.

    I can say there are entire years that I never even gave my past UC episodes a thought. I look right past the scar daily without noticing and usually go to the restroom once or twice a day. As a matter of fact, as I write this it is almost 8PM and I went to the bathroom this morning when I got up. I had breakfast and lunch and just had dinner, still no urge other then urination from time to time. A bad day, usually after eating too much of something too saucy or chocolaty, is maybe 5 times a day. Pizza of course is my favorite. I can eat all I want barring calorie concerns.

    My first year post surgery my body had to adjust a bit with respect to incontinence. After several months, the J-Pouch adapted and started absorbing more fluids so that I could drink as much as I wanted.

    Funny story. I was deadly serious in the Fall of 1990. I had had enough of UC after 4-5 years. My other doctor, not my surgeon, wanted to try some new meds when I brought up the surgical option to him. He was really pushy on the new meds. I just wanted my life back so instinctively and desperately I said… “Well if you don’t schedule the surgery, I will start it myself and somebody else is going to have to finish when they find me bleeding out of the bathroom floor!” I was having surgery less than a month later.

    My experience with the J-Pouch has been flawless for almost 24 years now. Not everyone will have the same results. Just trust that your body knows what to do with the good parts left after the surgery… provided your surgeon can predict you will have good parts left to work with.

    When Dr. Lichliter removed my entire colon, it weight 23lbs and looked nothing like a colon. Crazy times. The point here is that I am bragging on the doctor’s skills and the amazing surgery that is the J-Pouch.

    Go get your life back! Go do what you were meant to do!

    Thanks, Rod

  20. k May 22, 2014 at 4:42 pm #

    Rod, Thank you for giving the account of you uc / j pouch experience. It is nice to have the historical perspective. I had uc 15 years before you did and had an emergency ileostomy in the mid 1970s. (J pouches hadn’t been “invented” yet.) It gave me my life back, and life went on from there . But if I had had surgery years later, I hope I would/could have decided upon a j pouch.

Leave a Reply