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          Part 1.

After lurking anonymously on this forum for several years prior to my surgery, I feel it is time to give back and hopefully provide some of the same insight and comfort I received from reading others experiences.

My baptism into the world of Ulcerative Colitis occurred when I was 28yrs old. My initial flare up was terrible and I didn’t really receive correct treatment for almost three weeks. In that time period, I was bed ridden and lost almost 30lbs. It didn’t help that I didn’t have health insurance at the time, but I finally got the treatment that began the healing process: heavy doses of prednisone and maintenance Asacol.

The UC stayed relatively under control for a couple years. I was able to go on and off the Prednisone as flare ups occurred and always on the Asacol.   But eventually the steroids wouldn’t hold the UC at bay. Thus, an additional four year battle to manage this terrible disease truly began. Sparing all the gory details, to which all you sufferers are privy to, I went through the following laundry list of medications.

  • Remicade
  • Humira
  • Uceris
  • 6MP
  • Lialda
  • Rowasa
  • Asacol HD
  • Predinisone
  • Nicotine (yes, I actually tried smoking cigarettes!)
  • Pain meds (several different kinds)

At one point, very close to my rock bottom, I came home from the pharmacy with literally a paper grocery bag full of prescriptions.

Now, to get to the point of this story.

Probably 3 years into my 6 year battle with Ulcerative Colitis, I began to get recommendations from doctors and family alike, to get the surgery and be done with it. But I was not in the mindset to give up. I was convinced that I was going to be in the lucky minority that goes into complete remission and never has to deal with the disease again. Each times things got bad, a new treatment would be available, or I would be ok going in for 3hr remicade infusions. I was a stubborn guy and I was extremely afraid of getting my colon removed, having an ostomy bag, etc. So, I dealt with flare ups and associated symptoms for the next three years.

During this time period, almost everything I loved to do was compromised or removed from my life entirely. I was an avid competitive runner, I could run sub-5minute miles, would win local 5 and 10K road races. I loved to camp, hunt, fish, go to the movies, roadtrips, vacations etc. To say I wasn’t depressed during this time period would be crazy. Somehow, I was able to maintain a full time job and wonderful marriage.

My days and activities had to be very structured. For example, my 45min commute to work had pit stops where I knew I could pull over, run into the woods and go to the bathroom at a moment’s notice. Going anywhere new caused pretty bad anxiety, because I didn’t know where the next spot I could stop for an emergency bathroom break. Again, these are things all you other UC sufferers have or still do deal with.

Fast forward to March 2013, thus began a 5 month spiral to my rock bottom, the point when I had no more fight left in me and a decision had to be made. I was having the usual flare up that was not being held at bay by a very recent Remicade infusion. What was different this time is I developed a high fever that wasn’t associated with any virus. I went to the hospital and found out that I had a Clostridium difficile bacterial infection. I spent two days in the hospital getting intravenous anti-biotics and prednisone.

Once I was stabilized, I was sent home, but I never did recover. I was in a constant flare up for the next 5 months and my Gastroenterologist began pummeling my system with a cocktail of drugs that was beginning to harm me more than the UC. Why? Because I was not ready to have the surgery.

The last 2 months are what beat me into submission. I had become almost completely incontinent. I was having accidents in my pants up to three times a week. I would have only about 1 minute from the first urge to go to the bathroom to find a suitable location before it was coming out whether I wanted it to or not. I started wearing a type of diaper pad for God’s sake! This, is what it took for me to accept that surgery was necessary.

          PART 2.

Deciding to have the surgery provided and almost instantaneous mental and emotional relief. I had been sick for so long, that it had become my new normal. I didn’t realize the constant level of distress I was living in and how it was taking its toll on me and my loved ones.

The weeks leading up to the surgery were much of the same concerning the UC, but an end was in sight. I had been visiting these types of forums for a few years by this time, but really started diving in deep leading up to my first surgery. I wanted to know all the possible outcomes good and bad, so I could mentally prepare myself.

During the routine tests and check-ups conducted a few days before the colectomy, it was found that I again, had come down with C. Diff. I was told that if I didn’t get rid of the infection prior to the surgery, it would have to be postponed. Fortunately, it cleared up and it was a go.

Apprehension and fear is certainly going to be normal before such a major procedure, and I was not immune to that. But again, I was ready, I had reached a point where life without this diseased colon had to be better than life with it. I was having the complete colectomy and ileo-anal anastomosis done in one procedure. The two-step surgery that would require me to come back for the final take down in about 8 weeks. August 13th 2013, I went under the knife.

IMG_1316

Photo: Me, not so happy, post colectomy/ileo-anal anastomosis.

When I woke up, everything was groggy, but my wife and parents were there and they all gave me the thumbs up. At first it was hard to comprehend everything, but as the anesthesia wore off, I noticed that I no longer had the constant urge to go to the bathroom. It really is an instant change. But there is pain. They keep you fairly medicated, but this isn’t a minimally invasive surgery. Things had been removed, refashioned, tweaked and added. And, I had an ileostomy bag. All of these facets added to the pain, and even through the narcotic haze, I felt it with every movement and breath.

The doctors want you to get out of bed and walk around as soon as possible, because it aids in recovery. This, for me, was the most difficult part. But I did it. I had mentally prepared myself for this battle and it helped tremendously. I knew things would get better, but I had to power through the bad to get to the good.

It was hard to see my ostomy bag and stoma for the first time. It’s not natural to have a piece of your insides out. It’s not comforting to also see your bodily waste pulsating out of a little mutant hole, but it gets better. It ALWAYS gets better. I spent 5 days in the hospital before I was good to go home and continue rehabbing. I learned how to change the ostomy bag, what to expect, who to call and contact if I had any issues. I was certainly ready to be in my own bed.

Certainly, the most challenging aspect after the first surgery was the ostomy bag. After the pain and soreness dissipated, it was the maintenance of the stoma and bag. I had issues with stomach acids irritating the skin around the stoma and it burned quite a bit. There are powders and creams that help alleviate this, but it was never something I fully figured out during my time with the ostomy bag. Another issue was that I am of eastern European and Italian decent, I have a bit of body hair. This became an issue as the hair grew back around the stoma and had to be shaved and trimmed as often as possible. A clean skin surface makes for much better base plate adhesion. Also, getting a good sizing for the stoma hole is very important. Changing the bag is a learning curve as well, but the rumors are true, Marshmallows are your friend. Definitely reduces the output and increases confidence that you won’t leak while changing bags.

Eventually, I returned to work with my new friend (the ostomy bag) and waited until I was ready for the take down surgery. The best part of this time period was, I DID NOT HAVE UC ANYMORE. I was able to go places confidently, I could empty the bag at my convenience, I was in control of my body again. I was not 100% “normal”, but it was so much better than before the surgery. The ostomy bag is easily concealable and only you and the people you tell will know you have one. It is that easy to hide.

Eight weeks later and I was being prepped for the take down surgery. For this, I had to go to the hospital and have the Jpouch inspected from the inside. This day was full of not so comfortable situations. The first examination was the doctor examining the pouch with a camera which included having to stick a camera up the old bum. Not so bad considering the amount of things that we with UC have had to go through concerning our butts.

The more uncomfortable test came when they needed to test the strength of my sphincter muscles. This was to make sure that I would be able to hold in the contents of the pouch without leakage problems. For this, the stuck what looked like a small, deflated weather balloon into the opening of my anus. The goal was to inflate this balloon and measure the amount of pressure I could force down onto it. The problem for the nurses, and for me, was that I keep squeezing the balloon out before they could inflate it enough. This was not a very comfortable procedure and after about the 6th time of me squeezing it out, I said “Isn’t enough proof that I keep squeezing this thing out that my sphincter is pretty damn strong?” They agreed and that test was over.

The last test was to actually fill the pouch with a liquid with some sort of tracer in it so they could see if there were any leaks. So, I was pumped full of this stuff, so much so, that my ostomy bag filled up too! Fortunately, I passed this test with flying colors and I was approved for the take down surgery scheduled for a week later.

Oh, did I mention that all these tests took place on my 34th birthday? Not my most favorite birthday ever.

So, October 16th, 2013, I went under the knife again for (hopefully) my last surgery. The removal of my ileostomy and take down to my newly formed Jpouch.

Part 3.

The surgery went well and I woke up in pretty good spirits. I actually felt great, no extreme pain and giddiness from knowing that I no longer had an ostomy bag and I was on my way to truly being UC free. I was able to immediately get up and walk laps around the hospital floor, completing ten laps on the first try. This was a cake walk, or so I thought.

What I didn’t know, was that anesthesia can linger for quite a while after surgery and since I was also on pain meds, I was feeling pretty good. Once the anesthesia fully wore off, I started feeling some discomfort. Also, this was the beginning of my Jpouch actually functioning. Once it started filling up and expanding, it hurt.

So, the first day was bliss, but the next four were anything but. The gas pains were the killer. There is nothing you can do about it and pain meds don’t touch it. It was something I had to deal with and allow to pass. It was a very tough four days, but it did pass and things got better.

The one thing you’ve got to remind yourself with this surgery is that it takes time to heal. I’m a pretty impatient person when it comes to not feeling well and I tend to push myself a little harder than recommended or is necessary. I’m also hard on myself. I don’t like to feel weak and rely on others for help, but they were humbling times and I needed to remind myself of these things.

***********

I’m going to switch gears and not follow the chronology post take down surgery. I want to let you all know how things are doing and what I found to be the best parts of living without UC and with a Jpouch.

Number one: It took a FULL YEAR to fully adjust and heal with the Jpouch. Your body must learn how to manage with this new anatomy. I had lots of discomfort in the beginning and would constantly convince myself that I had pouchitis or some other awful side effect associated with the Jpouch. I have never had pouchitis or other complications the 2.5years since takedown.

I also dealt with a lot of butt burn that first year and CALMOSEPTINE IS THE CATS PIJAMAS! That stuff is literally the best and has saved my butt hundreds of times. In the beginning, the watery stool and abundance of stomach acid really wreaks havoc on your butt. Use the cream.

Learn what foods agree or disagree with your pouch. In the beginning, foods with a lot of acids like spaghetti sauces made the burn worse. Also, lots of fiber was not helping either. Nuts and things that would stay somewhat solid all the way through the digestive tract kind of tore me up on the way out. And alcohol, for me it was not a good match with my new anatomy in the beginning so I had to severely limit my intake of beloved beers and vodka on the rocks. Of course, spicy food. I love it, but don’t try it.

Also, in the first 6 months or so, you will be going to the bathroom frequently. It’s not the emergency feeling of UC, but your ability to hold large amounts of material is limited. The pouch needs to stretch, you need to figure out the feelings and adjust accordingly. But, you don’t have UC.

**********

Where I am today.

I am the happiest I have been in almost 9 years. My life is pretty damn nice and normal. I go to the bathroom probably about 5-7 times a day, but I hardly keep count anymore. It’s actually a good thing when I am sitting at my desk all day for work, it allows me to get up, stretch my legs and take a break. The food sensitivity has decreased dramatically. I can actually eat whatever I want, within reason. I can drink alcohol, within reason. But, dark beers are a treat because they still cause some upset pouch/stomach issues. The butt burn has become a rarity, but I still have a tube of Calmoseptine handy at all times.

I can hunt, fish, camp, ride a motorcycle, travel on a plane, and go on vacations with no worries whatsoever. I can actually go up to 12 hours without going to the bathroom sometimes without discomfort.

The number one thing I am happy about, and yes, this is bragging, I can run again. I can run fast. I recently ran a ½ marathon in 1:21:51. That’s a personal best for me. I am running times that are approaching what I ran in high school and college. I NEVER thought I would be able to do those things again.

race_2989_photo_35484047

In closing I just want to impart some wisdom I have gained in hindsight. If I knew then, what I know now, I would have had the surgery 3 or 4 years earlier than I did. What I understand is that other people can suggest and recommend going under the knife, but only you can make the decision. It is only when you realize how life battling UC is so unbearable, that life without a colon couldn’t be worse. Yes, it’s a tough road to recovery, but the light at the end of the tunnel is super bright. Just ask yourself how long you want to be a slave to the unpredictability of UC or know that you are once again in control.

I hope my story helps, I took a lot away from these forums and they were a tremendous wealth of information. If you have any other questions, I will answer them, no problem.

*****Update January 17th 2019: 5years 5months since surgery.*****

Everything is still good.  No problems with pouch or associated issues.  No medication other than the Calmoseptine on occasion (when I choose to eat hot wings and drink beer).  I know the ramifications of eating spicy food, but sometimes its just worth it!

42387510_2296887093867848_8776828448912965632_n

****Update October 16, 2023: 10 Year Anniversary!****

In honor of my 10th Anniversary of the last surgery, I wanted to let all know that everything is still great.  I haven't had any issues that required GI intervention since then. 

I still utilize the calmoseptine on a fairly regular basis but otherwise life is as normal as can be expected. 

The wife and I have since moved to Montana and the work life balance is great.  I still highly recommend the surgery for all the reasons outlined in the original story.

This forum has always been a great resource and I am happy when I receive notifications periodically from other UC folks in need of support or guidance.  Take care all and keep up the fight.

raft

Attachments

Images (4)
  • IMG_1316: Not so happy after first surgery. Colectomy/ileo-anal Anastomosis
  • race_2989_photo_35484047: Most recent race, May 2016
  • 42387510_2296887093867848_8776828448912965632_n: 5-years Since Surgery
  • raft
Last edited by New Yawker
Original Post

Replies sorted oldest to newest

Fantastic! You are such a talented writer to start with and you write with true grace and passion.

You are also a true inspiration for others. 

Yes, I agree, fear of surgery is often our worst enemy...but we all need to reach our own cut off point before we make the leap. I am so glad that yours turned out so well...kudos for the 1/2 marathon.

Keep on running and keep on writing.

Sharon

Nick,

 

Its been a long time since I've visited this forum, glad you reached out.  

Yes, everything is the same.  I am still extremely active and have had zero issues since the year after the take down surgery. The pouch is an after thought in my life now.  I still go to the bathroom 6-8 times a day, but that's only because I go when I feel the need and don't want to feel uncomfortable.  I could hold off if necessary with minimal discomfort. 

I never had the ostomy long enough to get used to it, so I don't know if that becomes easier with time.  I'm sure it does. The advantage you have is knowing that living with an ostomy is doable and if there ever was re-occurring issues with the Jpouch, you know you could go back.  Again, I've had zero issues other than the first year of healing post take down. 

I would highly recommend the surgery if you want to do away with a ostomy bag. I had my surgeries done at the Cleveland Clinic in Weston, FL.  Dr. Steven Wexner is pretty much the rock star of these surgeries.  If that is an option you can explore, go for it.  

If you have anymore questions, feel free to reach out again.

 

Good Luck.

New Yawker:

First thank you for your post.  I am a 71 year old male, who was very active until diagnosed with UC and now have an ostomy (for about 6 months).  I do feel better (good days and bad days), but dislike the ostomy bag and being medicated with Entyvio every two months.  A recent colonoscopy showed the UC still present and doctors say reconnecting me would not be an appropriate procedure.  So the doctors are recommending colon removal and a J-Pouch.

Although they have not explained the entire procedure to me yet, I am assuming the operation will be a two step procedure--1) close the ostomy, fix a hernia behind it, remove the colon, form the J-Pouch and form an ileostomy. Step 2, about two months later, would be the takedown.

An alternative to the operation would be to stay like this and hope the medication will eventually put the UC in remission and I can be reconnected.

One final note; I am very concerned about the operation, especially at my age, but your posting was helpful.

Any thoughts from anyone would be helpful.

Nick10136   

I know you started this post a long time ago. But you did a great job explaining.  I have an end ileo now. Went through the pouch thing. Didn't work. 

But it's still 100 percent better than uc. 

Or. A non-functional pouch.  So I'm good. 

It's a hell of a surgery to go through and it knocks you in the dirt for sure. But we can come out ok. And you made that clear. I'm happy yours works well for you. Mine somehow just made it worse. 

Great story. People that are thinking of getting the surgery will be well informed by your original post. 

UC is bad. The surgery is painful. But we do get over it all in time. And when that point is reached. It's wonderful! 

62 years old with an end ileo. And I'm healthy.. right where I need to be. 

(your story sounds like mine. I did it at 58 years. Started it. Being older I think. Was harder. You know. Set in my ways) 

Richard. 

Nick, a person’s general physical condition is usually a better indicator than age concerning how well surgery will go.  I was 68 when I was advised to have my J pouch removed, but the surgeon I saw for a second opinion said he could only recommend an ileostomy rather than an internal pouch based on my age. I was in very good physical condition. Since I strongly did not want to get the bag, I researched my options online and decided to get a BCIR (similar to a K pouch).  The surgery went very well and I now enjoy a very good quality of life.  If you are in good physical condition, your age should not be a factor on how well surgery goes.

Agreed 100%...some of us go into surgery in great shape and come out flying...others go in a depleted, exhausted mess and take much longer to come back from it. Age is more of a factor, sooner, for women due to menopause and the side effects that it can cause like thinning, weakening muscles mass etc.

For men, testosterone helps you keep up your muscle mass longer and allows for somewhat faster healing compared to us girls  (sorry girls, biology will always out)...so, if you are in good shape, no underlying diseases, careful of your nutrition (within the scope of your possibility) and have been active, although it is never a walk in the park, you should come through just fine.

I always do better when I am physically healthy before going in...

So, prepare, build yourself up and do your best...the rest is up to your surgeons and your biology.

Sharon

 

 

skn69 posted:

Agreed 100%...some of us go into surgery in great shape and come out flying...others go in a depleted, exhausted mess and take much longer to come back from it. Age is more of a factor, sooner, for women due to menopause and the side effects that it can cause like thinning, weakening muscles mass etc.

For men, testosterone helps you keep up your muscle mass longer and allows for somewhat faster healing compared to us girls  (sorry girls, biology will always out)...so, if you are in good shape, no underlying diseases, careful of your nutrition (within the scope of your possibility) and have been active, although it is never a walk in the park, you should come through just fine.

I always do better when I am physically healthy before going in...

So, prepare, build yourself up and do your best...the rest is up to your surgeons and your biology.

Sharon

 

 

I went in at a healthy 176 pounds. Ended up at 128 pounds and beat.  

I didn't go into this blindly. Or unhealthy. It was elective and preventative surgery. Uc was not going away after dealing with it all my life.  And having it specifically where I had it cancer was a definite risk. 

Expect the unexpected. 

Mystic,

It happens, going in in great shape and coming out a rag...but I prefer to stack the odds in my favor. For the original K pouch surgery, I went in as a normal kid of 18...around 120lbs...came out a month later at 89lbs...but that is bowel surgery. 1 Month on I.V. pretty much took me down to a skeleton...but a gained it back...(and back, and back, and back....we won't go there!) 

Supplements, healthy nutrition, joy and happiness all play a role...going in with a good attitude helps too...not feeling abandoned or defeated but ready to concur the world and come out swinging...

Belief, prayer (to whatever entity you believe in) and a support system are all major factors in success...no one can scientifically tell you why one person will have a better outcome than another, only that it is a multitude of factors and the more you do beforehand the easier it will be later (or not).

Sharon

Nick10136 posted:

New Yawker:

First thank you for your post.  I am a 71 year old male, who was very active until diagnosed with UC and now have an ostomy (for about 6 months).  I do feel better (good days and bad days), but dislike the ostomy bag and being medicated with Entyvio every two months.  A recent colonoscopy showed the UC still present and doctors say reconnecting me would not be an appropriate procedure.  So the doctors are recommending colon removal and a J-Pouch.

Although they have not explained the entire procedure to me yet, I am assuming the operation will be a two step procedure--1) close the ostomy, fix a hernia behind it, remove the colon, form the J-Pouch and form an ileostomy. Step 2, about two months later, would be the takedown.

An alternative to the operation would be to stay like this and hope the medication will eventually put the UC in remission and I can be reconnected.

One final note; I am very concerned about the operation, especially at my age, but your posting was helpful.

Any thoughts from anyone would be helpful.

Nick10136   

Nick,

I was of the mindset that some new drug or treatment would beat my UC into submission and subjective myself to years of potentially harmful drug cocktails.  If you are being treated with such drugs and still experience the flare ups, think about the possibility that you could live a perfectly normal life, without any UC.  The absolute worse case scenario would be that the pouch doesn't work out for you and you need to revert to a permanent ostomy bag. Even if that was the case, you would no longer have UC and wouldn't have to take maintenance drugs or medications that potentially cause cancer. 

It is a tough decision with a variety of potential outcomes.  I am obviously a success story and advocate the surgery time and time again.  Again, it boiled down to me realizing that any outcome has to be better than dealing with constant distress of flare-ups and treatments.  The surgery for this has advanced tremendously over the years and I believe chances of success are great.

 

Good Luck Nick and if you have any further questions, feel free to reach out.

 

Brett 

New Yawker..

I noticed that you also had Dr Wexnar as your surgeon.  He did my surgeries back in early 2016.  I totally believe that is so incredibly crucial to have the absolute BEST surgeon to do this type of procedure. When I made the choice to have the Jpouch procedure done, the first thing my GI dr said to me was "There is only 1 doctor that I will send you to and that is Dr Steve Wexnar at Cleveland Clinic.  He is the BEST surgeon in the world." Life is good! I'm the healthiest I've been since my early 20's. 

Loved reading your story! 

Thanks for sharing!

Michele

 

NEW YAWKER

This story brought tears to my eyes, and I'm pretty emotionless!

I have never related to a piece of text more in my life, i'm 3 months post takedown and I have never been so depressed before, not even when I was sick. But reading your story and just about every other one with a happy twist at the end gives me so much hope. I've been doing pretty well so far, i'm able to walk around quite often, i've been trying new foods without too many issues and I'm by some grace of god only going to the bathroom around 4-8 times a day depending on what/when/how much I eat. 

I see myself adjusting quicker than the average jpoucher (or maybe it's just all in my head) so I know that the endgame is near. My biggest issue is how fragile I am. Sort of like a dandelion. I've always been athletic and active so now being a bum that lays in bed all day because i can't handle too much physical activity is stressful. Also my ostomy site has healed, but it's still quite pink and fresh. 

I have yet to try eating raw veg but that's okay, not my biggest concern.

Do you remember how long it took before you felt ready to take on sports/physical activity again?

 

Hey Johnathan,  I was actually active again very soon after takedown.  But then I also worked out with my first ileostomy and my second (after the first failed takedown).   I started each time I came home from the hospital, walking 1/2 mile the first day and then adding 1/4 to 1/2 mile a day until I got up to 5 miles.  Then I would jog for a couple of minutes alternating with walking.  Plus I started back to lifting with 15 pound dumbells after every surgery.  So now, four months after takedown I can (slowly) run 7 miles, and  I deadlifted 225 pounds last Sunday afternoon (I weigh about 135).  So I think you need to begin slowly without expecting too much of yourself, then adding a bit every workout.  I was also a bit depressed and for me  that went away as soon as I was jogging again.  But not all depression lifts so easily - you may want to seek medical support.  There is no reason to allow depression to keep you from a full recovery.  It can be treated in many different ways.  I wish I only went 4-8 times a day!!!  On some of my first runs I went 4 times in three miles.  I've learned the best time to run is first thing in the morning before I eat or drink anything.  

Jonathan posted:

NEW YAWKER

This story brought tears to my eyes, and I'm pretty emotionless!

I have never related to a piece of text more in my life, i'm 3 months post takedown and I have never been so depressed before, not even when I was sick. But reading your story and just about every other one with a happy twist at the end gives me so much hope. I've been doing pretty well so far, i'm able to walk around quite often, i've been trying new foods without too many issues and I'm by some grace of god only going to the bathroom around 4-8 times a day depending on what/when/how much I eat. 

I see myself adjusting quicker than the average jpoucher (or maybe it's just all in my head) so I know that the endgame is near. My biggest issue is how fragile I am. Sort of like a dandelion. I've always been athletic and active so now being a bum that lays in bed all day because i can't handle too much physical activity is stressful. Also my ostomy site has healed, but it's still quite pink and fresh. 

I have yet to try eating raw veg but that's okay, not my biggest concern.

Do you remember how long it took before you felt ready to take on sports/physical activity again?

 

Jonathan,

I'm happy my story has been impactful to you.  

I believe I started attempting to exercise about 4-5months post-takedown.  Very minimal at first.  Walking 3-days a week, followed by walk/run 3-days a week, until I could fully run for 30-mins 3x/week.  I did that for quite a while.  

Again, I went through "growing" pains of new anatomy for a while.  As the pouch begins to expand and tolerate the jostling of running, you may find that exercise may exacerbate any discomfort you may have.  You have to listen to your body.  

You should also try to continue any other hobbies/activities that interest you to keep your mind active.  Socialize as much as you can tolerate.  All these things will help you with depression, as will exercise.  But, if you find yourself still in the dumps, there is no shame in utilizing an anti-depressant to get yourself over the hump.  

Cheers,

Brett 

Wow! Your story could be my story. Except I’m a 54-year-old female ultra runner. I’m hoping post surgery that I will be able to get back to doing long-distance running again.

This is a great story of perseverance and the strength that we all have lying in wait. I still believe my many years of Ultrarunning will get me through my surgery to come. I have UC, have been on every med you mentioned...and I  have cancer now and they will be removing my entire colon  extremely month...and eventually I’ll have my J pouch. I’m hoping I’ll be complication free and get back to doing what I love. 
thanks for sharing your long journey.

 Best wishes!

Last edited by Ddras

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