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Recently diagnosed with UC. Looking for advice & tips

Discussion in 'Bad Dog Cafe' started by awasson, Oct 12, 2018.

  1. william tele

    william tele Doctor of Teleocity Ad Free Member

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    I can't even begin to talk about what it's done to my grown daughters life. She was married while in remission but her husband couldn't deal with the result when it came back with a vengeance. She was chained to the bathroom, had to quit her job and started trying everything her gastro guy could think of. Prednisone was pure hell, Remicade didn't work either. She had one good summer and that was all over the past 10 or more years.

    Earlier this year she finally was able to get on Entyvio. We are very happy that she seems to be heading for remission and has enrolled in some career boosting classes. Infusions every eight weeks and the insurance is sucking us dry...but she's alive and living a somewhat normal life.

    I hope there are cheaper options for you Awasson. It seems that this one condition has many different faces and many different treatments. Stephanie tried all manner of diet options...to no avail. At least the Entyvio proved to be a magic bullet to some degree if nothing else works. Best of luck to you!
     
  2. TeleTucson

    TeleTucson Tele-Afflicted

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    Our family's experience with this, which was quite extended and serious, left me believing that it is one of the least-understood conditions out there. Maybe that's not surprising as an autoimmune disorder. What was amazing was that it ended as abruptly as it came on, after 5 years of treatments, heavy medications, and visits to the top medical facilities on both coasts. Twenty years without a trace now. So trying to predict your experience with this is a shot in the dark IMO, but there are good outcomes sometimes. Regardless, I'm sorry to hear about your situation - it can certainly be a big factor in your life.
     
  3. awasson

    awasson Poster Extraordinaire Silver Supporter

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    Well, the colonoscopy itself is a breeze. Don’t worry about it at all. I think your fortunate to be able to schedule that in while you’re good and healthy. Even in the rough condition I was in, the procedure itself was fine. They doped me up enough so that I was present but so that I wasn’t in any state of worry or concern.

    The prep is outrageous. You have to drink this solution that clears you out entirely. You drink a batch in the evening and the same in the morning. This stuff makes you run to the toilet every 15 minutes or so so be prepared. I felt pretty good after it had done its thing actually. Make sure you are well hydrated for the prep and maybe have a clear sport drink (nothing with dye) to keep your dielectrics up.

    You’ll do fine and you’ll be relieved when they give you the news that everything is a-ok.

    Oh man, I’m sorry to hear your daughter has had such a rough go with it. It’s encouraging to hear that she is heading towards remission again. I’m in early days, barely 2 months in on my first official flair up but since the first treatment attempt is pretty much useless, I’m getting the picture about how much trial and error can be involved in getting it treated properly.

    It seems diet for me at the moment only matters in the context of what can I eat that will supply me with nutrients and won’t cause an adverse reaction. I’m doing ok with white bread, chicken soup, white pasta, ripe bananas and I’m constantly having a little water to to keep me hydrated. I mean nothing is back to normal but it’s keeping me alive.

    As far as costs go, yeah I can see how this can rack up, especially the different meds. I’m in Canada. Some provinces don’t have a healthcare premium, ours does but it’s only about $50 per month. Until now, I’ve been really healthy so I’ve never even given it a second thought. You pay your monthly premium and go about your life. I have a whole new appreciation for it now. It’s no magic bullet but my visits and procedures are covered. I have to shell out for the meds of course and that’s pricey. I may be able to apply for a subsidy of some sort because UC is a chronic condition. If that’s the case, they’ll look at my income and figure out a yearly maximum amount that I’ll pay out of pocket. Once I reach that number, the rest of the year’s prescriptions are covered. They do that with seniors up here. It’s something I’ll look into. My current course of treatment is around $300 per month but since it’s not working, it’s likely to change and I’m pretty sure the costs get higher as they ramp you up to more exotic treatments.

    Twenty years in remission sounds like a great ending to the suffering. Congratulations.

    Yes, this is a mystery. Even though the steroids aren’t helping reduce the UC flair up, my sinuses are way clearer, my sense of smell has improved and apparently I stopped snoring. The other annoyance I have is chronic dry skin, particularly my face, ears but my hands and feet as well. The steroids seem to have made that go away too. Leads me to believe my immune system is on overload 24/7 which is probably why this entry level course of treatment isn’t doing what it needs to do.

    Anyway, I’m glad to hear the UC in your family is in remission and has been for so long. That’s awesome.


    Thanks again everyone.

    Andrew
     
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  4. imwjl

    imwjl Poster Extraordinaire

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    Be careful without the guidance from an appropriate specialist. I had a period with GI, pancreas and endocrine problems. It was qualified experts who sorted it out and not a fad diet book author. It was telling that each specialist handed out the same diet that was everything in moderation, low fat, and well balanced.

    A friend with the problem OP mentioned got his life much better by doctors orders and changing habits - little to no eating out and being more aware of food prep.

    One of the biggest bits of wisdom I got from the specialists was not going to extremes makes lifestyle change easier to do and stick with.

    It might be right for some to have a diet skewed in a particular direction but you need to do it with true expertise and change your lifestyle in ways you can stick with.
     
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  5. awasson

    awasson Poster Extraordinaire Silver Supporter

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    Yup, absolutely right.

    When I was released, the doctors and nurses at the hospital said “you can go back to your regular diet”. When I visited the GI specialist on Wednesday, I asked her about that and she said yes, avoid raw vegetables but you can go back to your regular diet. The thing is, they don’t know what my diet consists of. Nobody asked!

    Fortunately I do have a low sugar, low fat diet, no junk food diet. My mom was a dietician and my dad was diabetic all his life so we always had a very clean diet, no soda, no junk food. The closest to junk food I ever had was a cheeseburger and a salad, every Tuesday when my dad was alive.

    So, this may just be coincidental and I’m still pretty rough but a couple of days ago I made some changes that seem to have been beneficial to my situation. I ignored the doctors suggestion of going back to “my normal diet” and switched to chicken soup made with organic baked chicken breasts, water, a few really well cooked veggies, white rice and some well cooked fettuccine noodles. Also ripe bananas, white toast a lactose free milk based protein drink and water with hydralyte (electrolytes). That’s my day.

    Nothing improved the first day but yesterday was better. The constant pain (cramping) reduced and went away for the majority of the day. The the rapid fire digestive activity (running to the toilet) was cut in about half. The end of the day (around midnight) was back to gas and cramping but I got relief and had a reasonably good sleep until about 6:30am.

    Now, I don’t know if it’s because the steroids are finally kicking or the salofaulk I administer in the evening is working but I’m cautiously optimistic. I don’t want to put the cart before the horse because honestly, I was feeling much better last week but something seems to have eased off.

    I’m also beginning to hate bananas, white rice, White toast, and chicken soup.
     
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  6. Nickadermis

    Nickadermis Friend of Leo's

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    I’m hoping that the diet change gets easier for you ! I have no trouble at home but I travel for a living and being thrown back into restaurants 12 meals a week really makes me struggle with the new dietary needs. I think we must have exact opposite dietary needs, all the foods you list are on my NO NO list :)

    Wishing you well !
     
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  7. awasson

    awasson Poster Extraordinaire Silver Supporter

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    Thanks I hope for the best for you too. Restaurant food will be a challenge for sure.

    I’ve got another specialist I’m seeing who will hopefully dialing in the good/bad foods for me. I’m hoping to get this settled down first but I’ve already run tests with him so once the results are in I’ll be sitting down for a consult.
     
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  8. Mjark

    Mjark Doctor of Teleocity Silver Supporter

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    The only medical advice I ever offer is "ice it". Probably not that helpful in this instance. Best wishes.
     
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  9. grooveiron

    grooveiron Tele-Holic

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    Sorry to hear this @awasson! I know a few people with UC or Crohns. Do you like red wine? It seems to help, one of my pals is now in the wine business partly because it helped him so much. Another uses CBD to deal with her Crohns, my brother in law was on nasty drugs for years, but the UC now seems under control. He is also a wine enthusiast. A lot of his trouble was stress, so when he changed to a less stressful job that also was a big help. Best of luck, mate!
     
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  10. Milspec

    Milspec Poster Extraordinaire

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    My Father developed UC in the Air Force back in the early '60's and was one of the first cases. They had no idea what to do back then and you was told that he would likely die within the year. Luckily, there was a French surgeon who was on a speaking tour talking about the very subject and was brought in to help. They basically removed much of the intestine and installed a collostomy bag. He was then placed on very high doeses of steroids 3 times per day. He had a very select diet and became built like a gorilla...I once saw him bend a 4 way lug wrench over his kneee. He also developed the "roid rage" which was very scary to a young kid.

    My father is still alive at 82 and about 8 years ago, doctors thought I had developed UC as well at 42 years old. It just started out of nowhere and I went from being a 6'4" 240 lb triathelete to 167 lbs in about 4 months with no end in sight. I was finally sent to the Mayo clinic after I exhauseted 5 specialists in my area who told me that I may not survive the year. The Mayo ran me through a battery of tests all week and in the end told me that they could find no UC nor Crohn's although the symptoms were a match. They didn't know what the problem was nor how to help, but they sent me home with the advice that it was going to be a life-long management issue.

    I eventually had to quit my job as it simply was not possible to perform it while running to the bathroom all the time. I looked like a zombie and would pass out at times due to lack of food. It was a terrible time to be certain, but it did not last. While unemployed, I cashed out my 401K and started a business as I could only work a job that allowed me easy access to bathrooms. Once I had that control, all the anxiety of being unable to get to a bathroom went away and the situation started to improve where I wasn't afraid to leave the house. That lead to an improvement in diet and after 2 years of that progress, I seemed to be back to normal....both in weight and function. I no longer have any problems.

    I guess the point of my story is that you really need to consider getting multiple opinions at this point as UC is a difficult diagnosis and that the anxiety that it creates can become its own problem. I literally lived on oatmeal with a spoon of peanut butter and few chocolate chips thrown into the mix for almost 3 years. That and plain boiled pasta / bread so I do understand a bland diet. I still managed to run 2 marathons on that diet though, so it can get it done. Even on the worst days, that oatmeal did very well on the angry intestines.

    At the end of the day, my specialists still believe that I do have UC and it is just in remission, but if that is true, it wasn't from anything that they did for me nor was it due to any medications. I really believe that it has to do with extreme stress and it's effects on the autoimmune system which is mostly located in the intestines. Remember also that humans actually have 2 brains as proven about a year ago. There is a second "brain" in the digestive system that has the ability to over-ride the body's systems independently of the persons brain. So, if that stress is causing the "second brain" to react, it can trigger a slew of symptoms that can be called a "disease".

    It just has a lot of variables that can cause a vicious circle to occur. Consider the plight of long-term POW's after WW2, they were starved for so long that many would die even after being introduced to food because the body could no longer process it. The same thing can happen to a UC / Crohn's cases to where the body no longer can process food due to long term denial. Even consider the anorexics who end up in the same situation....that "second brain" is the problem and I think that comes from stress / anxiety long-term.

    Don't let the symptoms control you and do your own research instead of relying on the doctors is my advice to you and others. The answer is not medications, I think the answer is really in the stress levels even if we don't think we are under such high levels of stress. So, take control of that aspect by removing any anxiety of bathroom access, take up yoga or some other stress reliever, and trust that your body can and will heal itself if you allow it.

    Good luck, you are certainly not alone.
     
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  11. awasson

    awasson Poster Extraordinaire Silver Supporter

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    Wow. Excellent writeup. Thanks for that point of view. It has been a pretty stressful year or so but I thought I had been handling it well. Maybe not. The bathroom access anxiety is at a minimum because I have 3 bathrooms to choose from and I have an office at the house.

    I run my own business which is one area of stress. I’m a software developer, mostly specialized website components and the demands can be extremely high. My contractors have offered to take up some of the slack while I’m down so I’ll have to delegate more and be less of a Lone Ranger.

    Thanks again for all of that. I’m glad you managed to get yours under control. I understand the weight loss anxiety. That freaks me out. As soon as I get into remission, im sure it will get back to normal though.
     
  12. gee.

    gee. Tele-Meister

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    Hey. I have UC. My story is similar to yours. I was diagnosed about 10 years ago. I put it into complete remission about 5 years ago. I will say that you will get A TON of advice about what works or doesn't work. BUT only YOU will know what works for you. Speedy454 gave some really good info. PLEASE listen to your Dr. and don't be afraid to swap doctors until you find one that listens and works for you.

    I've been down all the crazy diet and drug roads. There's some good but a lot of bad in that thought too. ALSO PLEASE feel free to PM me on here if you just need an extra ear about this stuff or advice on eating or whatever.
     
    Last edited: Oct 15, 2018
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  13. Steve Ouimette

    Steve Ouimette Tele-Holic

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    UC guy here as well for the past 10 years. gee is right, you will get a lot of advice but over time you'll definitely get better at figuring out what works best for you. And also, please feel free to PM too. We have to help each other out on this!
     
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  14. Milspec

    Milspec Poster Extraordinaire

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    Gee and Steve make a very important point and it was the same advice my Father gave me...you know your body better than anyone else so do what works for you. Everyone reacts differently to different food choices, keep a food diary and you find out what works and what doesn't for you. It just takes time to wrap your arms around it.

    The other true thing is that everyone suffers from something. As you walk down the street, you need to remember that every single person you see has some problem that they are battling as well. Maybe it is cancer, diabetes, arthritis, etc., but they all have something. You just happen to have UC, that's life so don't ever let yourself think that you are alone in dealing with problems and never let it hold you back. If I could run 2 marathons while in the midst of that crap, you can keep driving forward as well.

    I do like your plan to delegate more with your business. The old adage that the owner should never be the smartest person in the business is a true one. If that is the case, you screwed up. Surround yourself with smarter people and delegate the tasks, you don't have to Lone Ranger it all the time as that will stress you out big time, even if you are not consciously aware of it.
     
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  15. Steve Ouimette

    Steve Ouimette Tele-Holic

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    Amen! Having UC has brought out my compassionate side and also made me understand that exact point. Everyone is dealing with something. That's life. And BTW, it is something that you can certainly deal with. It's not pretty but the more you go through it, the better you get at figuring it all out.
     
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  16. cnlbb

    cnlbb Tele-Afflicted

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    You're going to get a lot of advice from other people who've had it and think that what worked for them will work for you. Unfortunately, it likely isn't, and might actually make things worse for you.

    So you have to figure out what does work for you. Keep a food diary, keep a regular diary, etc... basically document. Document how you feel after you eat, document getting busy at work and missing a meal and how you feel. Document, being stressed/angry/etc.. (like everything this will be half mental). If you're given a new drug to try... better believe you'll want to document that. Build a pile of data and then work with your doctor to find what is best for you.

    You'll be amazed how quickly you learn to both read your body (because you're thinking about what you're actually feeling - quick shoutout to the sensorium) and see links between behaviors/actions and outcomes. Most people tend to take relatively random stabs at what's going on, just describing general memories whenever they hit the doctors, or noticing how awful it gets after a giant pizza. This sometimes leads to people cutting out many things they don't need to (ie: I only eat mold from Argentina - the silver country). Scientific method yourself.
     
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  17. edvard

    edvard Friend of Leo's

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    The first time I had a UC flare-up, I just tried to "ride it out". 3 weeks of bloody diarrhea told me otherwise, so to the doctor I went. At first they prescribed some mild steroids and whatever over-the-counter I could to slow down the diarrhea, but I eventually saw a specialist who put me on Sulfasalazine. He told me I would have to be on it the rest of my life, but I didn't believe him. The prescription ran out and I went on with my life.
    5 years later, it came back. I didn't have insurance at that time, so my wife consulted the internet. She got me on massive doses of Vitamin E and some stuff for my guts called RF Plus. It took about 3 weeks, but that put it down for another 3 years.
    Another flare-up, another colonoscopy, another round of Sulfasalizine and I was on my way again, once again telling myself I didn't need the pills after the scrip ran out.
    2 years later, I had my last flare-up and finally gave in to the reality of my situation and went in for another evaluation. Same specialist, same meds. I've been taking the SSZ regular for about 3 years now, and no complications. After my last colonoscopy the doc said he could still see quite a bit of scarring, and to be aware that UC sufferers have a somewhat higher risk of developing colon cancer later in life. He said regular colonoscopies every 3-5 years should catch any developing so they could get me treatment earlier, but I still would rather not have to deal with any of it.

    I'm not your doctor, so I can't tell you that Sulfasalazine is the answer, but I didn't see it mentioned in this thread, so maybe ask about it. It's worked wonders for me, and I'm not going to let the prescription run out again. I eat a normal diet, though no fast food and nothing processed, and I've taken to eating more fish & vegetables. YMMV, listen to your doctor, and reach out when you need to.
     
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  18. awasson

    awasson Poster Extraordinaire Silver Supporter

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    Thanks.

    I’m on Sulfasalazine, it’s also known as 5 ASA which was easier to remember. So far I’m not sure that my flair up is at a point where it does any good. If it offered instant relief, I’d be happy to administer it every night. Right now it’s a pain in, well, you know where :oops:

    I take Sulfasalazine at night and 9 mg Entocort (budesonide) in the morning. I’ve been on this combination for 24 days now and I think maybe the effects are starting to show.

    I think that when I was scoped the PEG solution cleared me out and gave my colon a well needed break. Then I got my scripts for budesonide and Sulfasalazine, which I started the day I got scoped. For the first couple of days everything was feeling better, almost no cramps, still many trips to the washroom but not so urgent and no cramps. Eventually the cramps kicked in and it has been up and down since. Bad days, not as bad days.

    Yesterday was the first day in the last 2 months that I went from 8:30am to 11:00pm without running to the bathroom. From 11pm to midnight it was a series of trips to the bathroom and the massive pain of cramps though.

    Today it’s been about every 5 - 5 1/2 hours. More towards the evening.

    Nothing is back to normal but there has been a change for sure. Again, I’ve been fooled into thinking things were shaping up but even just a couple of days of less activity and pain have been pretty good. My guess is that maybe it’s taken 20+ days for the steroids to get into the gut and start suppressing my immune system.

    Thanks everyone for the input :D
     
  19. 24 track

    24 track Doctor of Teleocity Ad Free Member

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    My heart and best wishes go out to all of you affected , please take care of your selves and remember none of you are alone!
     
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  20. DonM

    DonM Friend of Leo's

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