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.

Living Through Severe Ulcerative Colitis

Meet Sean:

About a year after moving to Portland,Oregon, I started going diarrhea 30-50 times a day while working as a mover. There was so much blood in every stool I passed, well I ignored this for about 2 years and just loaded up on anti diarrhea pills I bought at the grocery stores.

I ended up getting toxic mega colon, severe pancolitis ulcerative colitis, pancreatitis, and Crohn’s.

I now am confined to a bed but can’t lay flat or on either side, I barely sleep and when I do I get soaked in sweat even in winter like rite now with the windows open and heaters off.

Some interests of mine:

Crossfit, motocross, powerlifting,mma, swimming.

Symptoms:

Nonstop bloody diarhea, horrible abdominal pain, night sweats and insomnia, cant lay on eitherside without pain and shitting myself cant lay on back have to lay on stomach with a slight twist, never get more than a hour of sleep without being interupted with having to jet to the bathroom ,sometimes i dont make it and diarrhea, myself on the way to bathroom (which is 10 feet away from my bed). Headaches and diarhea 24/7 i go about 30-100 times a day sometimes i just stay on my toilet for hours cuz i cant stand up and wipe without having to go immediately again.

Living Through Severe Ulcerative Colitis

Has anybody else got the disease to this severe of an extent? How do you live life? I got denied unemployment cuz they know about my diseases and dissabillity hasnt accepted my claims. I almost don’t know if I’m gonna be able to pay rent.  I can’t work and can’t get any help from any government assistance, not even foodstamps, I got denied on that too.

Life is looking hopeless for me. I’m using the bathroom about every 5-10 minutes, sometimes I can’t control it and diarrhea sprays out by itself as I’m trying to run to the bathroom.  I sleep maybe 25 minutes a day and that’s interupted by bathroom visits and in my 25 minute naps i get soaked in sweat and I’m in Portland, Oregon.  It’s winter, I keep all the windows open and heaters off and still am so freaking hot and sweating. I lose about a cup of blood or more with each diarhea, im 130 lbs and in may i was over 230 of pure muscle with low bodyfat. At ohsu the nurses said during my month stay that they have never seen that much blood in stool, i was filling up to rim those white toilet hats with blood when i pooped, we are talkin 30 -70 times a day, they still cant see how im alive with all the blood losss daily, when i eat food it comes out undigested in my bloody diarhea. I feel like i would rather die than live with these diseases, having pancreatitis, pancolitis uc (severe), and severe Crohn’s and stomach ulcers on top of everything. It’s just so miserable i know they can remove my colon entirely but my stomach and pancreas and small intestines are severely damaged can they even remove that many organs? Seems extensive to have no digestive system don’t you think? Anyways Im screwed in this life at 25 years old and i truly believe its an environment trigger after moving here to portland oregon.

written by Sean

submitted in the colitis venting area




11 Responses to Living Through Severe Ulcerative Colitis

  1. Adam
    Adam November 27, 2016 at 1:26 am #

    Dear Sean,

    Thank you for sharing your story. It is awful and hard to hear from you and knowing that you are going through such a difficult time with the symptoms right now.

    Are you currently seeing a gastroenterologist with whom you trust? You should be. And one who has some experience with Inflammatory Bowel Disease(IBD) such as UC. There are many out there.

    I looked through the doctor database page on the site, and these three names came up for Portoland, Oregon:

    Oregon

    Portland
    Dr. Kian Keyashian (gastroenterologist)
    http://www.ihaveuc.com/dr-kian-keyashian-gastroenterologist-portland-or/

    Dr. Donald Lum (gastroenterologist)
    http://www.ihaveuc.com/dr-donald-lum-gastroenterologist-portland-or/

    Dr. Derek C. Taylor (gastroenterologist)
    http://www.ihaveuc.com/dr-derek-c-taylor-gastroenterologist-portland-or/

    Give them a read. As for surgery, well, you probably have alot of questions about that since yes, it is a big deal as well. But rest assured, there are many successful stories of surgery on this site that you can become educated about, heck, I even published a brand new one a few moments ago on this link that somebody sent over:

    http://www.ihaveuc.com/j-pouch-121015-complete-success/

    Lastly, I want you to know that there was a time back in 2008 and 2009 when I was living through severe ulcerative colitis symptoms. It seemed as though it would never end, bloody bathroom trips after bloody bathroom trips over and over again, day in and day out.

    I had no clue where to turn, as the medications I tried were failing me. In the end, major changes to my diet have seemed to be the best solution, and I continue on with that today nearly 7 years later.

    You too will find a solution that works best for you, but I think for now, you need to make sure a good qualified Gastro doctor is looking over you, especially with severe out of control symptoms.

    Keep us posted on how things go for you Sean,

    Adam

  2. Wendy
    Wendy November 27, 2016 at 7:04 am #

    That’s so horrible. I didn’t work for two years and I had a two-year-old at the time. All her toys were around me in the bathrooms. I was exhausted. I did eventually go to the doctor and I tried herbal supplements. It took a very long time to figure out what was right for me. I took the medication they suggested at first. Prednisone is usually what I take to get over the initial horror of the symptoms and then I get a medication to maintain. I had many complications from the maintenance medications as I was allergic to them all. I am currently trying to maintain on herbal supplements. I think every colitis experience is different. Every attack has been different for me and I also think it is different for every person. That’s horrible your situation. It is very difficult psychologically. Amidst all the fighting to keep a good attitude and struggling to survive I had one really good person say to me, “Do you not want to get better?” People have a very difficult time understanding this. I think it helped me to have more compassion on other people who are ill. I hope you find a way to fight it soon. Hang in there. I wish there was something I could do to help.

    • Kara D
      kara November 27, 2016 at 7:39 pm #

      You are in a terrible place but yes Adam is right you need practical help. I ignored my symptoms for ages when first diagnosed in 2011 and lost nearly all my blood it is easy to be in denyal. Please hang in there and get the most practical help you can. Can you get a social worker or anyone who can help you fight the decision for disability to be knocked back? I’m from Australia so I’m not sure of your system there. It can get better when things feel so bleak don’t forget that.

  3. Lisa November 27, 2016 at 7:38 am #

    Are you on any medications?? This seems quite severe….so severe, that it kinda sounds like you should be in the hospital, NOT at home!…especially if you’re losing that much blood & nutrients. I have moderate pancolitis & was diagnosed in 2014 after 2 years of on and off symptoms (i assumed it was IBS…but when i started seeing blood and started going more than 10x a day i knew something was wrong). I have now been in remission 2 years…..& although my GI put me on Apriso to help maintain remission, i really think the herbal supplememts i read about, & have been taking, is at least 70% of the reason why i have been doing so well. I take 2 Florastor probiotics per day, 2-3 turmeric capsules per day, 4 marshmallow root capsules per day, & 2 boswellia tablets per day. These supplements only cost me a mere $40-$50 per month & i believe have helped tremendously. I also have my CT medical marijuana card. I used marijuana during my last flare in 2014 (before medical MJ was legal in CT), & i found smoking it helped my pain & anxiety quite a bit….so when it became medically legal, i got my card immediately. The dispensaries sell things that i believe will help whenever i do flare again…vape cartridges, edibles, capsules, etc, are all quite helpful. I’d highly suggest that as well. As for disability….dont get too frustrated, you have to keep trying and eventually they’ll sometimes approve you…especially with a doctors letter. I wish you luck. Hang in there.

  4. Polly
    Polly November 27, 2016 at 9:04 am #

    Have you been tested for C Diff??? You should get tested ASAP! It’s an easy stool test.

  5. Polly
    Polly November 27, 2016 at 9:24 am #

    Sean,
    We are currently driving across the state of Wisconsin and I’m typing on my phone… Your symptoms match the symptoms I had exactly when I had severe C Diff. C Diff is a bacterial infection in the large intestine… It is a dangerous infection and requires antibiotics. Please let us know if you’ve been tested for this… And tested recently and more than once. The probiotic Sacchroymces Boulardii will cut down on the number of trips you take to the bathroom. You can find it in pharmacies under the brand name Florastor. I took 4 pills a day… 2 in the morning and 2 in the evening.

  6. Martha November 27, 2016 at 11:27 am #

    I am so sorry that your disease is that severe. I am the main caregiver for my 20 year old autistic son who also has severe uc. He is hospitalized when he symptoms are not even as bad as you are describing. It takes several days of IV medications to get his symptoms under control and he usually ends up losing a lot of weight. He once dropped down to 111 pounds which looked truly horrifying on his 6 foot frame. You are most certainly not alone in your misery. I wish I could tell you that there is one sure fire cure. Some find relief in drastic dietary changes, others medication and still others surgery. I’m sure you find yourself not trying to get through the day but trying to get through the minute. I will be praying that you not only find a doctor who can get your symptoms under control but also that you will have friends and family to support you while you are at this low point. Keep looking forward, there is hope, you can achieve a more normal life again. Just keep doing the next thing.

  7. ella November 27, 2016 at 3:55 pm #

    Dear Sean,
    It sounds that you have infection from C-diff, or MAP.
    But, don’t loose hope. Please call dr. Chamberlin, he treats cases like yours. He will return your phonemail and direct you on the next step.Meanwhile do C-diff test couple of times.
    Good luck. It will pass and you will be ok enjoying your life.

  8. ella November 27, 2016 at 3:56 pm #

    Dr Chamberlin:
    http://thecrohnsinfection.org/dr-william-m-chamberlin/

  9. DebraK in Florida November 27, 2016 at 9:50 pm #

    Sean, so sorry to hear of your situation. I hope you are getting enough fluids in you as dehydration can cause headaches, as well as other bodily function problems.
    Are you able to do any type of work from home? That could help you financially.
    I think when it gets so bad, you don’t always think straight. Sometimes you don’t want to fight, but it does get better and you have to remember that there’s light at the end of this. You’re just in a bad spot right now. Just the other night I had a blockage and thought I was going to die. I didn’t care. I just wanted the pain to stop. But I am in a better state of mind today. Today I am a fighter. I can’t give up. I have too many things I want to do with my life yet.
    Be a fighter. Go through the motions. Define the steps to get yourself better. Make the appointments, get the tests and medication, get yourself on a clean diet. You’ve got to get your gut calmed down. Get your stress lowered–any way you can. Get enough sleep. Read, read, read…understand your disease. And stay in touch with this site for truly great support. In my opinion, only those that have a gut problem really understand it. Other people can support you, but people who relate to you best are those of us who are going through or have gone through, what you are suffering with now. Trust me, we feel your pain…don’t feel alone. You will enjoy life again…promise…

  10. Alan December 1, 2016 at 1:16 pm #

    Sean,

    I live in the Portland area as well and I went through what you are going though right now for 3 years straight. I believe that I can help you. Email me at alanc137@gmail.com

Leave a Reply