Ulcerative Colitis Tips


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"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

How Smart Is Surgery?

recent picture of John

recent picture of John, the 1,132nd writer to share his story on iHaveUC, and….he currently lives over in Hong Kong!!!

I love traveling, trying out new experiences and foods, and working with people from different countries and cultures. I’m generally a relaxed & easy-going guy with a sense of humor.

Current Colitis Symptoms:

Symptom free at the moment

How Smart Is Surgery?

The standard approach of GIs for ulcerative colitis is to treat with medicine & monitor for cancer. Cancer is dealt with if and when it shows up. Hopefully it can be caught early & eliminated via surgery, in the event it does show up (which, for most of us, it won’t). Since my initial diagnosis I’ve never given colon cancer much serious thought & definitely would not have considered surgery as a means to mitigate cancer risk. However I’ve had an experience lately that’s changed my perspective.

I’ve been diagnosed with UC for 2 years. I had a pretty intense 4-week flare in Oct 2014 which was brought to an end via prednisone. As of late Nov 2014, I had been symptom-free for a full month. I went for colonoscopy in late Nov expecting to be 100% clean, given I’d had no symptoms for a full month & my body normally heals pretty quickly. I definitely didn’t think there would be anything to indicate cancer. After all, cancer risk is supposedly not escalated for the first 8-10 years of a UC diagnosis.

The colonoscopy revealed that the disease was still active & I had hundreds of polyps throughout the entire colon (no way to tell if they were a problem until the histology came back). I also had a stricture in the sigmoid colon. My GI said the stricture may be malignant. I said “shit, I’m scared” and he said “I’m scared too”. That didn’t make me feel any better. I immediately pulled up some academic studies & discovered that, indeed, strictures are often malignant in the context of UC (one study said they’re malignant 40% of the time, and that cancer in the context of a stricture is often late-stage).

So I spent a miserable weekend waiting around for histology results & was extremely relieved to receive the pathologist’s report with no dysplasia or malignancy.

This was a bit of a wake-up call: over our lifetimes, our risk of colon cancer is very, very high. Yes, according to the stats it doesn’t escalate for 8-10 years after diagnosis. But over our lives, this risk is over twice as high as a pack-a-day smoker’s risk of getting lung cancer.

Sure, meds may slow the inflammatory process, which is what ultimately leads to cancer. But we’re all on the same meds, and the cancer risk is still very high according to the most recent studies.

Moreover, regular colonoscopy screening is generally not a good tool to catch cancer. They completely miss the cancer about 30% of the time. And in the context of ulcerative colitis, the type of cancer that manifests is generally very aggressive (only 20-25% 5-year survival rate, versus >50% for normal people with colon cancer). So in my opinion, waiting until you see cancer to make a surgery decision is a poor strategy.

My question to all of you is: why not get surgery preemptively?

Assuming I live into my 70s, with pancolitis I have a 30-40% chance of getting colon cancer during my lifetime. Getting colon cancer would be 10,000x worse than living with a j-pouch, which would be a manageable lifestyle adjustment that I’d probably get used to within a year or two. It seems like the smart thing to do is to get surgery & eliminate the cancer risk.

My current plan is to see if a change in meds can result in long term mucosal healing, which I’ll monitor via routine sigmoidoscopies every 6 months & full colonoscopies every year. I’ll also continue to play with my diet & try out some natural remedies (acupuncture, hypnosis, etc.) But if that stuff doesn’t work, I’m pretty set on colectomy in the next 2-3 years.

Let me know if you think I’m crazy.

Medications Supplements I’m Taking:

Currently on pentasa & prednisone. Getting TPMT test & probably switching to azathioprine soon.

Supplements: tumeric, folic acid, calcium / vitamin D, iron / vitamin C, fish oil.

written by John F

submitted in the colitis venting area




cancer, surgery

15 Responses to How Smart Is Surgery?

  1. Tom
    Tom December 12, 2014 at 2:49 am #

    John

    given that they’ve found polyps in your colon i think you are on the right track thinking about surgery. The other thing to remember is that while you have only been diagnosed for 2 years, UC can lay dormant with no symptoms for a long time before it starts to manifest in the form of the normal flare ups etc. while i was diagnosed at age 22 i think i had UC from age 14. Obviously if there’s a chance you’ve had it say 20 years but only been diagnosed 2, then you risk of cancer is that of somebody who has been diagnosed for 20 years.

    My story is i was diagnosed at 22, put on 5ASA meds. Didn’t really do much to maintain remission, massive flare at 23 requiring 11 day hospital stay with IV steroids, IV ciclosporine, 6MP and more. Basically I couldn’t taper off the steroids at all as my UC had become steroid dependant. long story short along with bad reactions to all the meds i was on, my steroid dependancy and my fear of what the future would hold with regards to cancer, i chose to have surgery at age 24.

    The original plan was to have a jpouch constructed during my 2nd operation but after getting on fine with a bag, i made the decision to make it permanent as i personally did not feel the benefits of having a jpouch outwighed the risks.

    I think you are making a wise decision but would stress that depending what your next sigmoidoscopy shows, sooner rather than later may be your best form of attack.

    All the best, keep us posted

  2. Pranav Ghandi
    Pranav December 12, 2014 at 2:50 am #

    Its better to have your colon removed at an early age…rather than in your 40s or 50s. I am 28 and had my colon removed last year…best decision I have made…no meds…can eat or drink anything…though keep in my the first 6 months are rough…

    • Ram2 December 14, 2014 at 12:30 pm #

      Hey Pranav

      Was your colon removed here in US ?

  3. John F
    John (original poster) December 12, 2014 at 3:01 am #

    Thanks all for your very thoughtful and helpful responses & also to those who replied on the FB post. The thing that surprises me the most at this point is my GI’s reaction when I tell him I’m seriously considering surgery now. He says “bad idea, let’s just change your meds”. A week prior this guy was shitting his pants along with me, thinking I had cancer. I’d love to get an oncologist’s opinion on this.

  4. Jim Miller
    Jim December 12, 2014 at 4:23 am #

    I’ve just completed the 3 stage journey to a j pouch. I have a lot to get used to, but I’m happy, healthy, and drug free. Not something I could have claimed to be when I had UC. My decision was forced, as my disease was no longer medically responsive and my colon eventually perforated. So I cannot speak from a pre-cancer perspective. However if you are seriously considering surgery as an option, and your condition is bad enough to warrant it, then I would recommend going through the operations while fairly young. I am in my mid-thirties and physically fit, and the surgeries took me to my upper limits. I would not want my colon removed in old age.

    Before I had surgery I was quite anti. But like you I started to research it and realised it is a viable alternative to life long chronic disease, when other options start to fail. The j pouch is the gold standard of restorative surgery, and although it carries clear risks , these are quite low, and are further reduced through careful vetting of your surgeon.

    Living without a colon isn’t easy, but once you make adjustments life can be great again. Mine is certainly a million times better than living with out of control IBD.

    All UCers with a bad case need to need to at least understand what surgery could mean for them. After all up to a third of us end up getting surgery in the end, according to some estimates.

    Good luck

  5. John F
    John (original poster) December 12, 2014 at 8:03 am #

    Thanks everyone for your thoughtful and helpful replies. In reply to several points raised, both on here and on FB (not replying on FB to remain somewhat anonymous):

    1. I do fully realize that surgery would be a major lifestyle change & is definitely not the same as having a colon. For one thing I wouldn’t be able to bomb logs down the river anymore (as Adam put it)…would need to use the restroom more often, could have follow-up surgery, pouchitis, etc. My point is that it’s a one-off change (provided there aren’t tons of complications for years and years afterward). People have a way of adjusting to one-off changes. I’m pretty sure I could adjust & I think the lifestyle adjustments are a fair price to pay for mitigated cancer risk. Not to mention being able to eat what I want & drink beers with my buddies (extremely tough lifestyle changes I’ve already made & am keen to undo), the elimination of UC flares & all the potential side effects from the meds. Best to do while I’m young and healthy.

    2. It’s true that many UCers develop other autoimmune diseases after surgery (Crohn’s, arthtiris, PSC). I believe Crohn’s is the most common, impacting 5-10% of post-surgery UCers. I’ve not found any evidence that surgery increases the risk of developing these diseases (i.e, they would have developed anyway without the surgery). But please let me know if you have evidence to the contrary.

    3. From what my GI has told me, inflammatory polyps (of which I had many) are “very common” among UCers, i.e. the fact that I have them should not affect my surgery decision (he’s quite anti-surgery). Does that sound right? I didn’t have any when I had my previous colonoscopy at the time of diagnosis, was under the impression that not all UCers get them, and that (although benign) they’re indicative of higher cancer risk.

    4. One reason I’m thinking to wait a couple years before surgery is to put out a kid. J-Pouch can mess up fertility for dudes too (though it’s relatively rare).

    5. Noted that the UC may have been there pre-diagnosis, and I may be later in the ‘cancer risk’ than just two years in. I do think back to my days as a 21-year-old with bloody diarrhea after getting food poisoning (though that only last 2 weeks & was gone after taking antibiotics)…and the bloody stools I used to get in the mornings after eating spicy hotpot in China (though those were always one-off / blood was gone by the next time). I’d given myself peace of mind that this wasn’t UC because those episodes were followed by nearly a decade with no bleeding & I have non-UC friends who sometimes get bloody diarrhea after big drinking nights & spicy hot pot. But it’s possible it was UC, way back then. Maybe I’m 11 years in & not 2. That said, cancer incidence stats on are based on the time period post-diagnosis (not post-UC), I think many UCers may be similar in that they may have suspected something during the years before their symptoms got bad enough to warrant a colonoscopy & diagnosis (so I’m guessing on average there’s a bit of lag time between the disease & diagnosis).

    6. Folic Acid – yes I take this as I read that Pentasa can cause folate deficiency. It’s my understanding that taking folic acid supplement does not cause B12 deficiency (though it can mask B12 deficiency).

    7. I totally understand the anti-surgery mentality. You need a damn good reason to pay a guy $100k to cut out your colon. Personally I never would have considered surgery (unless forced into it) until I had the colonoscopy. To all UCers who are sticking it out via the traditional GI route, I fully understand & respect that and wish you all the best.

  6. Paul Willoughby December 12, 2014 at 2:38 pm #

    Hi John,
    I had colitis for 12 years before deciding that I’d reached the end of the line on therapy and had the Jpouch surgery. I am no longer taking any meds and feel better than before the surgery. I have the green light to get the next step done – removal of the ileostomy and start using the pouch. Your decision is up to you, but if you’ve only been diagnosed a couple of years ago, it might be worth trying some different therapies before making the ultimate decision.
    best wishes,
    Paul

    • Paul Willoughby December 12, 2014 at 2:40 pm #

      forgot to mention, – 8 weeks post surgery and 46 years old. I went back to work 4 weeks after surgery.

  7. k December 13, 2014 at 2:20 pm #

    Hi John,
    You and others have done a good job in discussing all the angles. Just to say that I have had an ileostomy for 40 years, over half my life now, and it certainly made life easier than the year or two before. My surgery was emergency, done three days after being finally diagnosed with uc. The colon perforated in the morning and was taken out that afternoon. I now realize I had it easy, no need to wonder “yes” or “no” about surgery. And j pouches hadn’t been “invented” yet, so the ileostomy. The diseased rectum was taken out the next year.

    All that said, the one thing I have never seen discussed is having an ileostomy and having a high PSA. My urologist has had to do some creative procedures to get samples for biopsies. And we aren’t doing them as often as maybe in the future we might realize we should have. I don’t know but maybe someone with a j pouch wouldn’t have this challenge.
    k

  8. Judith K
    judith kupstis December 14, 2014 at 7:54 am #

    I am a 62 year old recently retired woman and suffered with UC for 30 years. Have been having annual colonoscopies for the past 12. This year I went in for what me and my Doc have come to think of a “routine” She was very surprised when she tried to do the exam and could not get the scope in more than the first couple of inches.Very concerned, both the doctor and me. Next day was in for a catscan and the next day I was in a surgeons office. My doctor arranged everything. The surgeon was telling me that I needed my entire large intestine removed along with my rectum! I was terrified! I had my surgery #1 Nov 6th and that’s when he did those things along with a temporary jpouch. It’s been a little over 5 weeks and I am struggling with low energy no appetite and difficult sleep. Since I am quite a bit older, I guess it’s going to take me longer to recover. I will not agree to step #3 until I feel stronger. There’s a huge emotional component to all this too. Its a sense of loss and the fear of what else may happen. I was not prepared for any of this it all happened so fast! (from Oct 7 colonoscopy to Nov 6 surgery. There was cancer and multiple strictures. But the surgeon says the cancer (lymph nodes tested) did not get past the colon and he got it all out with the colon. Take care of yourself and best of luck! Judy K

    • John F
      John (original poster) December 14, 2014 at 8:43 am #

      Judy, thank you for sharing your story. It’s very helpful to know what actually happens when they do catch cancer. In your case it’s extremely fortunate they were able to catch the cancer early. We will all keep you in our hopes and prayers.

      Best of luck — wishing you a speedy recovery and many healthy years ahead in your retirement!

  9. Mary February 23, 2015 at 4:15 am #

    I have a few hours now until surgery. I completely understand how you feel. Since I can’t sleep, I’m reading a few more stories from people who have had surgery or have considered it. I have suffered from UC since my 20s, now I’m 44. My Dad died of colon cancer and have been battling a flare for the past two years.
    I appreciate you sharing your experience and I feel reassured that I’m making the right decision. Although I do not have cancer, the risk seems too great. I am a single mom and my boys are counting on me. I think the surgery has been a long time coming. I’m nervous but have a sense of calm at the same time. Thinking of living a life that doesn’t revolve around my disease.

    Thanks to Adam for creating this website, to you and every other UCer that has shared their story. I haven’t posted much but I have
    read plenty and it has all helped me psychologically prepare for this day.

    Mary

    • Bev February 23, 2015 at 7:05 am #

      Thank you for posting Mary. That was a lovely post.

      Please keep us updated on your new HAPPY UC free life!!

      It may take awhile, but I know it will be fabulous!!

      Cheers:)

      • Mary February 27, 2015 at 3:53 am #

        Hi bev!! Thanks for your response. I’m not happy just yet but I hope to be uc free some day. At the moment it is still dictating my life. I get out of the hospital today and continue my recovery and will return for two more surgeries.. I can say that the surgeons and nurses here at mount sanai in new york are extraordinary.

        • Bev February 27, 2015 at 7:10 am #

          That is so wonderful, Mary.

          All will be well soon.

          Cheers and good health:)

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