Ulcerative Colitis Tips


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A 2nd Chance At Life – Removing My Colon

I am a 20 years old. I run multiple online businesses and do freelance work. My UC was severe, but surgery has given me a 2nd chance at life. Follow me on Twitter (https://twitter.com/jakeocallaghan) if you want to follow my recovery and check out my blog (jakeocallaghan.com).

Jake-still-standing

Some more about Jake:

Crazy dude. Going to travel to/live in south America. Voracious reader – fiction and nonfiction. Like playing videogames – especially RPGs. Used to workout constantly (can’t wait to start again) and am obsessed with health + productivity. I value freedom and truth. I live a disciplined life and always try to improve.

Symptoms:

Symptom free. Almost too good to be true!

A 2nd Chance At Life – Removing My Colon

My name is Jake O’Callaghan. I am a 20 year old college dropout (UGA, full scholarship) that was paying the bills through freelance writing (before I got sick).

My UC was severe. I went to the bathroom 20-40 times a day and was often so weak that I fell over and had to crawl back to bed.

I had zero quality of life. Life consisted of lying in bed in pain (I slept 16-20 hours a day), running to the bathroom, and ordering food because leaving my apartment was impossible.

I lived in the hospital, especially as my disease progressed. I spent my birthday and Christmas night there. One time I stayed for a month.

I tried everything I could (including strict SCD without dairy, eggs, or fruit), but nothing worked.

I went to Emory hospital in Atlanta and was rediagnosed as having UC (previous GI’s thought it was crohns).

I was already considering surgery, but now I was sure. I researched hundreds of surgeons and chose Jay Singh. Fantastic surgeon, explained things well, and great bedside manner.

I got c diff for the 2nd time a week or so before surgery. My mom collected the stool sample because I was in bad shape (she works in the medical field so she’s used to it). All the blood (and my current state) freaked her out. She called and got the surgery moved up.

Before the surgery I was in so much pain that I rarely ate. I was on prednisone (and feeling the effects), but it wasn’t helping much – though I think it was the only thing keeping me alive. I’m thankful the surgery was moved up 3 weeks because I don’t think my colon would have stayed intact much longer.

The combination of having no food in my stomach (caused endless dry heaving) and extreme weakness made the colon prep horrendous.

I sat on the toilet for ten hours or so (lying down made the stomach pain worse) so I didn’t sleep the night before surgery.

I stumbled into the waiting room. Somehow I had made it to the hospital without going to the bathroom, throwing up, or falling down. However, I had to rush to the bathroom multiple times after I was moved to a room.

The anesthesiologist was worried that I wouldn’t wake up from the surgery. But I couldn’t wait. I would only get weaker.

I felt an overwhelming sadness when they wheeled me away from my parents. There was a chance I wouldn’t wake up again. Just a month before I had begged for death. But I desperately wanted to live now that I had hope at living a good life.

I woke up and started screaming. My entire body was convulsing and I could barely move. They assured me that the surgery went well and gave me every painkiller known to man. The nurse said “this usually doesn’t happen”. However, the man next to me had the same surgery and was also screaming!

This was the worse pain of my entire life – and that was saying something. I didn’t think that things could get much worse than an IV rupturing in my arm (sending TPN into my veins), but I was wrong. I can only imagine what toxic megacolon feels like. It lasted an hour or so.

Most people actually feel pretty good after surgery (due to pain meds of course). I probably had a high tolerance to opiates.

I just reminded myself how great it was to be alive and waited it out. I’m used to intense pain, but that experience will always be engraved in my memory. I’ve had nightmares about it.

They rolled me to a room after I stabilized. Nurses had to throw me into the hospital bed because I couldn’t move or roll. At one point I tried to move onto my side and the pain made me gasp for air.

My blood pressure was high so they encouraged me to use the pain pump as much as possible. It was 6mg of dilated every 4 hours. My blood pressure soon became too low. I also had a high heart rate. I believe this is from the shock of waking up in intense pain.

I was extremely dehydrated. I could barely move my mouth. My lips were super dry. Talking was hard because I was so weak and at one point I lost the ability to talk altogether. I also had a sore throat from the breathing tube.

They gave me multiple boluses of fluid (7 or 8). This is unusual. My blood pressure would raise than lower again. They started to worry that all this fluid would cause damage.

They kept trying to put me in ICU. There was about 10 people in my room, and they were freaking me out.

A nurse came in and yelled that “I was going to have a heart attack.” A women from ICU came in after and told me that I was dying and needed to be put on life support.

I started sobbing after the women left. I almost never cry, but I’ll give myself a free pass on this one considering all the pain meds I was on. I cry all the time on opiates, sometimes for no reason.

One of the nurses calmed me down and I stabilized slowly.

It’s crazy how weak you are. Sitting up was impossible without help, and I needed a nurse to help me walk at first. Getting out of bed up to take a piss was a long, painful ordeal.

I pushed myself to walk and eat as much as I could. I know since recovering from 2 ACL surgeries that pushing through the pain (using common sense on when to stop) makes you better.

Seeing the stoma freaked me out. It’s been over a month, and I’m still not used to it. It turned out great though. The nurses were impressed.

The opiates do almost nothing for the horrible gas pains. Since you likely won’t have the complications I had, gas pains will be the worst thing you experience. They are going to be bad and may last for weeks, but if you have UC feeling pain isn’t unusual. Difference is, now you know the pain will go away and that you are moving forward.

My penis hurt from the catheter. I refused to look at it the whole time and didn’t think about it. I don’t deal well with stuff like that. Unsurprisingly, taking it out hurt pretty bad, but it was a relief to be done with it.

There was a point when they were determined to put in my catheter again because I wasn’t peeing enough. In sheer fear I chugged water and was able to pee. Dodged a bullet there. I heard putting it in hurts a lot and my junk was already really sore.

I had a drain hanging out of my other side. Taking it out hurt pretty bad (though I had it in for much longer than most, so it hurt more). I could feel it disconnecting from something in my body. Thinking about that made me a little sick.

I started having trouble breathing the night before I was supposed to get released. They determined I had fluid and multiple clots in my lungs. Barely being able to breathe was frightening, but luckily no one told me I was close to death until days later.

I think they doubled up on the blood thinner (shot that burns like hell – everyone has to get them anyways). They also took me in for a thoracentesis procedure. They numbed the area, poked a hole in my back, than drained the fluid. They were baffled at how much fluid was in my lungs; they hadn’t seen anything like it. I leaned over for an hour (sitting) while fluid dripped out of my back.

The blood clots set me back significantly so I spent twice as much time in the hospital as normal. They gave me high doses of steroids and antibiotics.

My pain was mostly gone when I got home (aside from gas pains) so I cut back on oxycodone. They were giving me 120-160 in the hospital and I went to 20.

Big mistake. I started hallucinating at night. Hallucinations don’t usually bother me but these where pretty scary. My mind was in bad shape. I tried everything to return to reality but nothing worked.

It seemed like I would be insane forever. I kept hearing scarecrow from batman telling me to kill myself and that my mom was dead. It was the worst experience of my life – by far.

I was also throwing up a lot from opiate withdrawal. I bumped up my dosage and the nausea slowly went away. I never hallucinated again, thank god.

My UC is mostly gone. I still have my diseased rectum so sometimes I go to the bathroom normally (it’s only mucus and blood, no stool).

I hate having a bag. I think it’s disgusting and it keep leaking (though I know I’m putting it on right).

I have had two leaks while sleeping. They were horrifying. I almost would have preferred to wakeup to the horse’s head from the Godfather. Hopefully things will get better as I find a bag that works for me. Can’t wait to get it reversed though.

My surgeon told me that my colon was in horrible shape. As I expected, I was close to toxic megacolon. My colon was falling apart. It actually ruptured partially while my surgeon took it out.

I would have died if I didn’t have surgery. But I would have done it if my UC was half as severe.

Whether surgery is worth it comes down to individual circumstances, but I think more people should consider it.

GI’s often prescribe medicine that doesn’t work, causes horrible side effects, or stops working in a few years. Wouldn’t it be better to avoid the toxic drugs (not to mention prednisone) and get surgery over with instead of just delaying things?

Also worth noting of course is the natural route. While diet, supplements, and marijuana didn’t work for me, they help many achieve remission.

The choice isn’t simple, but don’t let surgery scare you. It’s important that you make a logical decision so you can live the best life possible.

I would get surgery again 100 times if I had to. I had a bad experience (your surgery will likely be much easier) and I still highly recommend it.

Sometimes it almost feels like I’m dreaming. I almost didn’t remember what it’s like to live pain free or to have energy (even though I’m nowhere close to full energy, that is still to come!). I can literally stare at the wall and be happy. There are times when I can’t stop smiling.

I feel for your everyone out there. I know UC can be horrendous, but there’s hope – whether through surgery or treatment.

Ask your questions below and I’ll answer to the best of my ability. You can also email me at iamjakeocallaghan@gmail.com or message me on Twitter. Keep fighting!

Medications & Supplements Tried:

Everything listed failed. Some helped a little. Prednisone is the exception but side effects were horrendous and didn’t work very well the third time.

Asacol (may have caused acute pancreatitis)
Remicade
Prednisone
Supplements (too many to list – includes glutamine, fish oil, vitamin D megadose, digestive enzymes betaine HCL, VSL)
Paleo diet
SCD elimination diet
Myers way diet + supplements
Uceris
Marijuana
Kratom

written by Jake

submitted in the colitis venting area




megacolon

8 Responses to A 2nd Chance At Life – Removing My Colon

  1. DebraK October 10, 2015 at 2:29 pm #

    Oh, Jake, I feel so bad to read what you went through. But I am so happy it is behind you. I had an abscess near my illieum in 2001, the size of a tennis ball. Horrible spasms and I just kept working. I recall being out of town on a new client conversion (I’m a software engineer & project mngr) and the spasms being so bad and frequent that I had a vibrating massager that I would put on the painful spot until it was numb. I felt like a rag doll, getting thrown around with pain. A week after returning home I was having emergency surgury. Worst pain in my life afterwards. I recall thinking that they must not have got it all because I was having even worse spasms. The NG tube made me gag, which tightened the muscules in my stomach. I had two drainage tubes. When they took the first one out, I thought I would die from the pain! Like yours, mine had adhered to my internal ‘parts’ and I could painfully feel tugging on my ovaries and my urethra. My insides were being pulled out that drainage hole! My screams could be heard two floors up in the hospital. The second one didn’t hurt, maybe due to pumping me with lots of pain meds.
    It’s a horrible disease, to be eaten alive from the inside out. I am so, so happy that you have progressed so far! My disease is Crohn’s, primarily in my small intestine. My doc wants me on Remicaid and I am literally paralyzed with making a decision on it. The side effects could be life (or death) changing. The doc is frustrated with me and it puts stress on me I don’t need. My disease is moderate now, nothing compared to yours was or many I read here. I can’t recall, though, the last time I had energy and was totally pain free.
    It sounds like you have a great life ahead of you! You are definitely a fighter! I hope for you a life of longevity, happiness, and no pain! Keep us posted and big hugs to you! I always love a happy ending…

  2. k October 13, 2015 at 5:54 pm #

    Hi Jake,

    Welcome to the
    “A 2nd Chance at Life – Removing My Colon”
    Club

    I joined 40 years ago – 3 days after I was diagnosed with uc, 1 day after I was told the surgery I might need, and a few hours after my colon perforated.

    J pouches hadn’t been “invented” yet, so I’ve had a “bag” for 40 years.

    I still consider it a miracle.

  3. Jake O Callaghan
    Jake October 16, 2015 at 9:46 pm #

    Thanks for the comment. I meant to respond earlier. You sound like – despite going through a lot – you have the right attitude.

    The one good thing about having severe disease is decisions like “whether I should go on remicade or not” are basically made for you.

    Good luck with everything!

  4. Jennifer October 22, 2015 at 11:27 pm #

    Hi Jake! I’m glad I encountered your post today. I just had my colon removed on September 14th. Like you, I suffered from horrible pain which was eventually found to be the result of blood clots on my liver and fluid accumulation in my abdomen. After getting a second drain and antibiotics, the fluid has cleared up. I’m now on injectable blood thinners for six months to treat and prevent new blood clots. I have had a very difficult time dealing with this change. My bag leaks (twice in the middle of the night) and my skin is reacting terribly to the pectin in the barriers. I go in to see the ostomy nurses twice a week for bag changes and to check my skin. I still have part of my rectum. The surgeon was barely able to construct a j-pouch for me because my blood vessels wouldn’t reach. So I occasionally have the bloody mucus BM’s (which is a trip) and use Masalamine suppositories to treat the the inflammation in what’s left of my rectum.
    I was diagnosed with UC in January 2013 after six months of bloody stools, urgency and terrible pain. I have tried Lialda, prednisone, Canasa, Uceris, 6-MP, azathioprine, Humira, Entyvio, and Remicade. I never experienced remission, and have also suffered from chronic anemia caused by this disease. This summer, the pain became unmanageable and my GI and I ran out of options. So I opted for surgery.
    I’m only just now starting to appreciate the vast improvement in my health. I am quite squeamish, and was very un prepared for the experience of surgery. So catheters, drains, and my stoma, all freak me out. I’m glad you shared your experience and wish I had heard your story before going into surgery so I would have been more prepared.
    Congratulations on your survival and good luck with your takedown surgery! I wish you the best with the rest of your recovery.

  5. Jake O Callaghan
    Jake October 24, 2015 at 7:40 am #

    Sounds like you’ve been through a lot, but I’m glad to hear you’re doing better.

    I used to be squeamish too, but by the time surgery came around I had gotten used to things after being in the hospital so many times. Still wasn’t pleasant though.

    Thanks for the support and good luck!

  6. Rachel H. November 5, 2015 at 5:43 pm #

    Hi Jake I just had the first surgery for j pouch too. My colon was in awful shape too. I tried everything too. Entyvio and prednisone was the last of the drugs and I swelled up like a balloon, still swollen, so I have get the weight off for second surgery. My stomach has a hole in it that constantly drains mucous and blood. There was a drain there from a postop infection. Other than that, I am thankful not to be in the bathroom 30 plus times a day. I hope you continue to feel better. Blessings. Rachel

    • Jake O Callaghan
      Jake November 5, 2015 at 6:25 pm #

      Thank you Rachel. My stomach is still a little swollen too from prednisone. Good luck with everything.

  7. Jo February 7, 2016 at 6:17 am #

    Hi to Jake and all the others who have had their colons removed. After fighting with my colon four years and trying every single meds all iyou mentioned, I made the difficult decision of a colectomy and a future J pouch.
    I was 100% prednisones dependent, which caused damage in my eyes, and great bone loss . If you haven’t had a DEXA Scan I would encourage you to do this to learn if you have bone loss so you can take proper medication to stop the bone loss.
    I think for me the SCD diet with the lack of milk products causerd my bones to be worse despite taking calcium with D. I had a DEXA done just before the UC began, and my bones were in perfect condition.
    just remember prednisone is terrible and a life saver!
    My older brother has been living with an ostomy for 20+ years due to colon cancer. He is glad to be alive and has not had any trouble with his ostomy since his surgery.
    I did not have all the difficulties that others have mentioned post surgery. The only difficulties I am having with the pouches is getting the adhesive from the flangr(wafer) off my skin. It takes me almost 15 to 20 minutes with adhesive remover to remove the pouch to put on a new one. Wearing a pouch doesn’t bother me partially because I have wraps and underwear to put the pouch in to keep it flat against my body. I also use water when after emptying out the pouch to completely clean it out so It really takes away most of the odor.
    If my UC hadn’t been so severe, after spending almost 80 days in the hospital over the last year and a half, never being able to function without prednisone, losing scary amounts of weight, the severe bone loss, damage to my eye, and just living from bathroom to bathroom, I wouldn’t have gone for the surgery.
    I am one of those people that had to try everything before I chose surgery. One of my friends took some photographs of me for two weeks and the day of my surgery. My skin was gray and yellow, and I looked like a scarecrow. I have finally gained some weight, my color is normal, and I am barely in the bathroom anymore. Yes I’m still weak from the surgery and just found out they also took out my inflamed appendix. Two organ removals for the price of one.
    I have opted for J pouch, and have been online in a J pouch support group & have spoken with people who had Jay pouches for 15 to 20 years without any great difficulties. Of course this is not the normal way that our body functions and there will be problems.
    I hope all who have had surgery are healing well and are adjusting to this new way of life. Just know that we fought a good fight to retain our colons, but sometimes we have to change course to win this battle.
    I wish you all health and well-being ,
    Jo.

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