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Recently diagnosed with UC. Looking for advice & tips

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

  1. awasson

    awasson Friend of Leo's Gold Supporter

    Nov 18, 2010
    So, after doing some precision searches of the Bad Dog, I’ve come to realize I’m not the only one with this condition and once they’ve shoved a camera up your backside, vanity or modesty goes right out the window. I’m looking for some tips, advice, experience, success stories, or what have you.

    A little about me
    I don’t get sick and rarely even get so much as a cold so this has completely flattened me. Before this happened, I was 185 lbs (I’m 6 ft 1). I’ve lost 25 lbs and can’t seem to put it back on; food still goes right through me so I’m supplementing meals with Ensure, Muscle Milk and a bunch of power protein drinks. I’d be in real trouble without them. The doc seems to think that’s a reasonable thing to do under the circumstances. She actually suggested I double up my consumption to 5 or 6 - 8 oz containers a day.

    I’ve been “flared” up for 2 months and I just got diagnosed 3 weeks ago. Of course no regular MD knew what was wrong with me so it took a trip to emergency to get a CT Scan, followed by the colonoscopy. If you’ve had one, I’m sure you’d agree with my sentiments about the PEG solution. Golytley my @ss.

    After I left the hospital I started a course of steroids (9mg entocort) that I take in the morning and a 5 ASA enema every night. I told you, vanity, embarrassment, modesty or whatever you want to call it, straight out the window. If it works, I will do it.

    I saw the G.I. doc yesterday and she was discouraged that I wasn’t a lot better. She said some people don’t respond to treatment, others do. I gave them more vials of blood and I see her in 2 more weeks. She will likely ramp me up to prednisone or biologics to force me into remission. This sucks! I am pretty much constantly exhausted and if exert any energy, like rake leaves or go up and down stairs at any rate of speed, I get out of breath pretty instantly.

    A little about you...
    Anyone else in this boat who cares to mention it? Any advice on what foods might stay inside for long enough so I can get things back on track.
    telestratosonic and dan1952 like this.
  2. moosie

    moosie Doctor of Teleocity Silver Supporter

    Jul 18, 2010
    You sir, are NOT full of crap. :lol:

    No UC, but a few colonoscopies. Procedure's a breeze, it's the prep that sucks.
    Nickadermis, dan1952, ce24 and 2 others like this.
  3. Boubou

    Boubou Poster Extraordinaire Gold Supporter

    Jul 30, 2005
    Montreal, Quebec
    My girlfriend has food retention problems, also on entocort
    Microscopic colitis
    Last edited: Oct 12, 2018
    awasson likes this.
  4. slickoneuk

    slickoneuk TDPRI Member

    Dec 16, 2007
    Look into autoimune paeleo diet, you are what you eat. I try to operate the keto diet principles. Once you cut out the processed junk it is amazing how much better the body operates. It is bloody hard going though, I won't lie. Suddenly food becomes a big part of your life. Preparing and planning.
  5. catdaddy

    catdaddy Tele-Holic

    Three months ago my nephew's wife had a fecal transplant for her previously unresponsive UC. Her response to the transplant has been transformative in a positive way. My suggestion to you would be to discuss the possibility of having this procedure done with your G.I. doctor. Best of luck to you going forward. Here's an article with some info:
    skunqesh and awasson like this.
  6. DrPepper

    DrPepper Tele-Holic

    Nov 24, 2017
    Food, beans digest slowly. If you can, try oatmeal with some chia seed added (soak the chia seed in water overnight in the refrigerator).
    awasson likes this.
  7. E5RSY

    E5RSY Poster Extraordinaire

    Mar 5, 2009
    Georgetown, TX
    Really? I've heard it "blows".
  8. DrPepper

    DrPepper Tele-Holic

    Nov 24, 2017
    "Go lightly" it is not...
  9. telleutelleme

    telleutelleme Doctor of Teleocity Silver Supporter

    Jan 15, 2010
    Ny wife has Crohns; which is closely related to UC. She was diagnosed in 1974. I have asked her to respond.

    It can be very difficult to manage and there are varying degrees of the disease. Lots of new auto-immune drugs out there, some of which are outrageously expensive but very effective. If you are offered any of these as an option, many of the companies will provide the treatments at no or relatively inexpensive cost if you apply for assistance. I have been on Prednisone for 25 years and its side effects are bad for most, but have not affected me.. If you can run a short course and get off it is better. Choosing correct foods for uc is important. I often resort to liquids such as Ensure. The bathroom needs are always an issue and you have to be aware of where you go and how accessible restrooms are. It is just something you have to deal with. Having a G.I. who specializes in Crohns / U.C. is deinitely a good idea. I have survived 44 years with crohn's and you can do it with uc. Best to you.
    Frodebro, elihu, william tele and 2 others like this.
  10. awasson

    awasson Friend of Leo's Gold Supporter

    Nov 18, 2010
    Thanks guys.

    Interestingly enough, I had a mild attack last year but didn’t know what it was and it just so happened that my wife wanted to try a Keto Diet at that exact time. I was an absolute gas bag but within a few weeks I was better. I think I’ll look at what we were eating and modify my BRAT diet to suit.

    Now that is interesting. I have enlisted the aid of an MD who runs a naturopath office and he said that he has a 50/50 success rate. The ones that work go into full remission but it doesn’t work for all. My sister in law is an ER doctor and she was saying that the rate of success is pretty good and that might be a good way to go if I can’t get success with steroids and other traditional means. She called it a trans-poo-sion. She’s super corny.

    Please thank you wife for that advice. Wow, 25 years of Prednisone. That is quite a feat. I have a very good friend who has Crohn’s. Hers has been in remission for about 20 years now. She was on Prednisone for a little over a year. She said that when she first started coping with Crohn’s, a few spoons of ice cream would help slow things down. Toast for breakfast followed by a couple of spoons of ice cream. Something for lunch, chase it with ice cream. She also said pasta and a cream based Alfredo sauce was agreeable.

    I’m supplementing with ensure and trying to keep hydrated. I think it’s pretty easy to become dehydrated due to all of the runs to the bathroom. I’m somewhere between 5 - 7 trips a day, usually beginning at 2:30am and ending at say 10pm. The morning is brutal and middle of the day seems to taper off.

    Thanks again for your wife’s input.
  11. EliN

    EliN TDPRI Member

    Oct 9, 2018
    Potato, Fish, pasta cooked Veges... Diet should help digestive issues, stay away from cream ,sugar until feeling well!
    awasson likes this.
  12. FenderGyrl

    FenderGyrl Friend of Leo's

    Jul 22, 2012
    I'm at work...but I would like to P.M. with you...

    I have been down the path you are on.
    I will write to you tonight.

    I read this thread. I have relevant info to share with you regarding meds... Etc.

    Froedert Medical College in WI saved my quality of life.
    awasson likes this.
  13. 6stringcowboy

    6stringcowboy Tele-Afflicted

    I could be wrong, but I'm pretty sure that unless you can get enrolled in a research trial FT is not an approved treatment for anything other than acute c. diff. Infection in the US? I think it's fairly standard in the EU/UK. Hopefully we will catch up soon.
  14. FenderGyrl

    FenderGyrl Friend of Leo's

    Jul 22, 2012
    In this time of need, A fellow member of our site has reached out for help.

    I'm pretty sure that he is going thru a lot of anxiety over his situation.

    Everyday living with various forms of this Chronic Disease can take the wind out of your sails. Imagine that you are living a real life version of the movie "Thinner" by Stephen King. Add to this the Doctors visits that only show the road to remission is a guessing game at best.

    Let's all keep our fellow member in our thoughts, wishing him the strength to see this thru to what we hope is a good outcome.

    Hiker, fendrguitplayr, EliN and 4 others like this.
  15. FenderGyrl

    FenderGyrl Friend of Leo's

    Jul 22, 2012
  16. chris m.

    chris m. Poster Extraordinaire

    I agree FT would be very well worth a shot. There are people doing it on their own these days. The downside risk is pretty low as long as the donor is very healthy. For example,
    if you had an under 18 year old kid in great health, I don't see much risk, especially if it's your own kid and therefore presumably has very similar symbiotic community species in the GI.
    awasson likes this.
  17. 24 track

    24 track Doctor of Teleocity Silver Supporter

    Nov 6, 2014
    kamloops bc
    my eldest bros suffered from this in the extreme , sincerly a ton of best of wishes comming your way! listen to FG
    Hiker and awasson like this.
  18. Speedy454

    Speedy454 Tele-Holic

    Oct 1, 2013
    Highland, IL
    I have UC also. I have been in complete remission for 9 years now after 2 years of hell. At my worst, I had to go every 45 min. round the clock to let the bloody stuff out. It was just awful.
    Mine was so bad they wanted to cut my large intestine out and hook me up to a bag.
    I found a different gastro doctor.
    He put me on Remicade since I was unresponsive to everything else. Actually worse than unresponsive. I had a severe reaction to some of the Asacol/Mesalamine and derivative meds that caused it to get real bad real fast. (That was with the first 3 doctors.)

    The last doctor treated it very aggressively with high dose steroid (temporary to stop the inflammation) and mercaptopurine until the Remicade kicked in.

    After about 2 months on the Remicade, he weaned me off the other drugs entirely.
    Within 3 months on the Remicade I was in complete remission.
    2 years ago I switched to Symponi, which is a self injection once every 28 days, mostly for the convenience.

    I have been fortunate in that since remission 9 years ago, I am not diet limited at all.

    While I was in bad shape, I listened to lots of people who said it could be controlled with diet, but mine could not.

    So my strong advice is to find a really good GI specialist, don't be afraid to dump him/her and find another until you get results.

    Remission is possible.

    As for the cost of the immunosupressives, it is very high. Most insurance picks up most of the cost of some of them. Work with your GI staff to find out which ones you qualify for.

    As a last resort, contact the folks at Janssen Carepath. If you work with them prior to your first dose, and if you qualify, you can get the meds for free.

    I pay $5 every 28 days for my Symponi injections.
    Almost anyone can afford that.
  19. awasson

    awasson Friend of Leo's Gold Supporter

    Nov 18, 2010
    Thanks for all of the help and info FG. It’s really encouraging to get info from people in the know. I don’t think any of the medical professionals I’ve consulted with have first hand knowledge so it’s really valuable to be able to compare notes with someone who has. As you mentioned there’s a lot of anxiety as a by product of not being able to just shake it off and carry on. This helps a lot.

    Oh man, I’m not nearly at that point where you were at your worst so I’m really encouraged that you’ve been in remission for 9 years. Congratulations for that!

    I know all about getting the bloody stuff out but at a more reasonable rate. I’m pretty much like clockwork but it’s every 4 hours while I’m awake and 6 - 8 hours when I’m asleep. I think things actually slow down when I’m properly asleep. If I’m the least bit lucid or if I do wake up, things happen and I have to jump up and hit the loo.

    Anyway, thanks everyone for the input. Misery loves company and well, if you play guitar, that’s even better!

    I feel better just from all of the relatable posts.

    Hiker likes this.
  20. Obsessed

    Obsessed Doctor of Teleocity Ad Free Member

    Nov 21, 2012
    Whoa, I have never even heard of this. My heart goes out to all of you that must deal with UC. You all are scary me. I have decided to have a colonoscopy this summer, but I have not scheduled it yet. Yeah, kinda chicken even though my wife, father and both younger sisters went through it just fine. Best wishes to get through it.
    Hiker, Nickadermis and awasson like this.
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