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Posted 6/5/2012 7:31 PM (GMT 0)
I was diagnosed with UC last October, suffering symptoms since last May.  Specialist has me on Mezavant ( 2 per day ) and Salofalk enamas which haven't been too successful...

The last couple of weeks I have felt very tired and quite weak. Going to see my specialist again next week.

Have not seen a significant change in things since I started the Mezavant and I cannot seem to find a single food type that doesn't set me off.

Just wanted to vent I think and trying to keep a positive attitude, but I recently turned 50 and finding it very difficult to change things and even when I have, things are not getting any better.

I REALLY want to find out what this "remission" thing is all about.

Questions for the "vets" in here... Do you sometimes get a jabbing pain in your lower left side. I have had the ususal "going" issues and the bloating etc associated with UC, but recently ( the last few days ) I have had a stinging pain in the lower left side... lasts for 3 to 5 seconds and happens a few times each hour. Not DRASTIC pain, but worrisome... Any info.

I have been taking Metamucil to help with the "straining" issues and for the most part that has been a good thing... Have others had issues with Meta long term?

As far as this elusive "remission" is concerned, do UC sufferers pretty much go back to "normal" once this magical time kicks back in? Prior to this awfulness I was a "one a day" healthy BM guy and I REALLY miss that guy... LOL...  If I get a handle on this, can I expect to see my buddy again?

Thank you all for being here...          

Posted 6/5/2012 8:02 PM (GMT 0)
Well my friend, I'll give 1 positive about this.

You got this at 50 close to the end of your career. I got this at 31 (I am 32), right in the middle of my career.

Now tell me, who's better off?
Posted 6/5/2012 8:10 PM (GMT 0)
Well to the forum.

I cannot answer all your questions but will do a few.

Salofalk enamas which haven't been too successful..
Do you have trouble retaining them or is your comment that they don't do anything? If they don't help then for the moment you should ask for a steroid enema which is stronger (but not systemic too much, just treats the lower area). Then when things calm down a bit more you can use the Salofalk enemas for maintenance.

I cannot seem to find a single food type that doesn't set me off.
Yeah, I've been there. Your colon is screaming bloody hell and is telling you it's hurt. My suggestion is to eat low-residue food (no fiber at all). Chicken broth especially homemade with no preservatives is very healing and nourishing. Skip dairy as much as possible and consider going gluten-free for now (no bread or wheat products). Jello would be good. Treat your gut like it's just been through surgery, very gentle food, lots of clean water, no caffeine. Eating chicken and salmon will give you energy and are easy to digest. Chew things well.
You don't have to live/eat like this the rest of your life so don't panic. Just try to get out of trouble right now.

As far as this elusive "remission" is concerned, do UC sufferers pretty much go back to "normal" once this magical time kicks back in?
It depends on whether you respond to medication. Some people snap right out of it. Those people aren't on this forum because they don't need to be. Most of us are in the category of A)not responding to meds or B)searching for the right med or C)losing remission while on meds. Everyone is different (I'm "A") and you will have to find out which group you belong to.

Mezavant isn't working you say so you'll have to try something else after talking with your doctor. Same thing with Salofalk (suggestion given).
After your colon settles a bit (I hope it does) please consider further diet modification along with meds. It works for many of us but there are many paths to remission.

Best wishes.
Posted 6/5/2012 9:24 PM (GMT 0)
Thanks Somedude... Ya I guess it could be a LOT worse... good luck to you.

Thanks as well imagardener, lot's of very helpful information. As far as the Salofalk goes, I am having trouble in the retaining department. I only wish I knew how much is being retained once I start my 1am, 3am, 5am routine ( after administering at 11pm ).  Perhaps I should just continue on and hope that some is better than none...

I am heading towards a very liquidy diet , including broths, jellos and lots of water. I have tried to basically cut out breads and have gone gluten when I want some. Very very limited amount of dairy but I think that will be gone entirely as well.  Very confused about side dishes ( salads, fruits, veggies ). So many conflicting reports out there.

Speaking of liquids... I have just started drinking Powerade Zero ( no sugar ) to help with my loss of energy... I wondered if anyone else uses these types of drinks to boost themselves. 

Any info on vitamins out there?  

Thanks again for the input... it is very much appreciated.     

Posted 6/5/2012 9:48 PM (GMT 0)
Hey Coquitlam guy! I have "Vancouver" on my signature but I actually live in Coquitlam. Hi Neighbour! :)

I have been taking Metamucil since my GI told me to start taking it, and that was in Dec 2008. I plan to continue taking it indefinitely. No reason not to.

I am in remission, and am pretty much back to normal! So yes it is possible, don't give up hope.
Posted 6/5/2012 9:49 PM (GMT 0)
Speaking of liquids... I have just started drinking Powerade Zero ( no sugar ) to help with my loss of energy... I wondered if anyone else uses these types of drinks to boost themselves.
Any info on vitamins out there?

Get your blood levels of vitamin D checked. That is probably the most important. You want to be at least 40 to 60 or maybe even 70 ng/ml. And you might also include checking blood levels of B12, iron, and folic acid. When I was flaring my blood levels were incredibly bad.

Powerade Zero may not have any sugar but it is full of sucralose which is an artificial sweetener that kills the good bacteria in your gut. We have dozens of threads here discussing how many of us believe we contracted IBD when our protective good bacteria were decimated by antibiotics. Consuming sucralose is not going to help things. Check out HealingWell's search engine for probiotics to see how we replenish our good gut flora.

I can tolerate small amounts of real cane sugar in chocolate but high fructose corn syrup in soda and most candy, as well as artificial sucralose, xylitol, and sorbitol, causes problems for me. I recommend drinking water. Now that my gut has healed from my last flare I can tolerate iced tea sweetened with stevia, even coffee with a little sugar and stevia. But you may not be ready for that if your colon is still inflamed. It took me a while before I could once again enjoy life's little pleasures.
Posted 6/5/2012 9:51 PM (GMT 0)
Make sure you squeeze out the air of the enema before you use it. Two hours retention when your flaring badly is good. Hopefully soon it will knock out some of the need to go that many times. Its concerning that you've been on these meds quite awhile already and not really getting relief. I would maybe ask for a steriod enema. That would be preferable to going on prednisone itself. You also should get some labs done for low iron, vitamin D and B12. Low iron can happen easily if your bleeding alot. All of these can make you feel tired, weak with no energy.

As for fruits and veggies, when your flaring raw veggies can be especially harsh. Fruits with seeds or peels on them can be harsh also. Most people tolerate bananas well. I don't which saddens me because I love them but don't love the gas. When in remission I can eat fruit and some raw veggies but I can't go overboard and eat alot. Salad I can eat a bit of but again not too much. Its all trial and error because we are all so different. I also don't do alot of dairy or anything even remotely spicy.
Posted 6/5/2012 9:52 PM (GMT 0)
Regarding retaining the enema, my GI has me take Immodium or an opiate at bed time about 30 minutes before my enema -- slows things down overnight and allows me to retain an enema for 8 hours, not to mention get a much needed full night's rest. I'd run the idea past your doctor but it's been a huge help for me.
Posted 6/5/2012 10:07 PM (GMT 0)
Thanks Pluot,

I will give that a try...

Posted 6/5/2012 10:12 PM (GMT 0)
Thanks Serenity Now,

Sure is a yucky day in Coquitlam today, isn't it... 

I actually don't mind the results I get with Meta but it's a catch 22... I find that it sometimes gets me up in the night and that doesn't help enema wise :)  man oh man this thing can be complicated at times...

Happy to hear you are in remission.

Posted 6/5/2012 10:14 PM (GMT 0)
Thanks Sherbear,

Lots of great info, much appreciated. I am going in to see my GI next Friday and will be armed with many many questions for him. Not exactly a fountain of info, but I am not leaving until I am satisfied... He is a "take these 2 pills" and deal with the consequences kind of guy... but that ends next week with me.   

Posted 6/5/2012 10:15 PM (GMT 0)
Thanks Babeinthewoods,

I was afraid of that sucrolose... I just thought I would give it a try and I will get those blood levels checked out.    

Posted 6/5/2012 11:44 PM (GMT 0)

Coquitlamguy said...





As far as this elusive "remission" is concerned, do UC sufferers pretty much go back to "normal" once this magical time kicks back in? Prior to this awfulness I was a "one a day" healthy BM guy and I REALLY miss that guy... LOL... If I get a handle on this, can I expect to see my buddy again?



For the first two and a half years of UC, I was under the impression that UC meant adjusting to a "new normal" and that remission meant no blood, no urgency. Some people don't improve beyond that but others find it is possible to get back to pre-UC normal with the right meds/supplements/diet/lifestyle. If you are still having issues and your dr doesn't seem interested in adjusting your meds, find a new dr.
Posted 6/6/2012 1:40 AM (GMT 0)
I have to have a very low fiber diet when flaring. I lovelovelove fresh fruits and veggies so that is hard on me.
I try to not have any gluten, ever.
I try to severely limit my dairy intake and my coffee intake. My one cup of coffee a day, with real cream is my one
indulgence. When I'm in a bad flare though, it has to go and I drink only black tea or green tea.

I don't do any artificial sweeteners if I can help it. Those things are super nasty for our guts. I don't do any soda pops
or carbonated beverages either.
I make my own tea combinations at home and i do use regular, plain old white sugar in my tea.
When I feel a flare coming on I will switch between steroid enema one night, then a Rowesa enema the next with
a Canasa suppository in the a.m. I think this works GREAT and my Dr. Intestine tells me that 2 hrs is an acceptable time
for retaining the enemas. All night is better of course. But honestly, if I were getting up all night long I'd insist that the doctor give me steroid enemas until things calm down. That just insane. no wonder you are exhausted!!! What about oral steroids/prednisone to nip this flare?? YOu are suffering pretty bad in my eyes.

I've just ordered my first Depends pads from this site to see if wearing them will cut down on my anxiety with having
accidents while out. I'VE had a few of those these last few months and its no joke. Very unsettling to say the least.
Luckily I was at home for all of them, but there have been a ton of very close calls while out.
I take my oral Lialda, or mesalamine, and am on fish oils and probiotics and vitamins to cover what I'm not getting via diet.
Im sure there is more that I am missing but this is my best info. at the moment.
Posted 6/6/2012 1:47 AM (GMT 0)
oh and I forgot. eat some cream of rice. use almond or rice milk with it.
If you can tolerate it, some good, homemade gluten free banana bread works
great when I'm pooing way too much and its tasty to boot.
If I am looking for fats I use clarified butter as its easier for me to digest. Some call it by its Indian name, Ghee.
I make my own and got a recipe off Google.
I get many gluten free (GF) recipes online. My gut just hates gluten.
But honestly, I've put on 25 lbs since I went gluten free. I finally figured out what I could eat that didn't make me WORSE and stuck with it. Along with treating my UC and finding GF products my body is maintaining my weight, to the point of being a bit pudgy now!!
Posted 6/6/2012 2:18 AM (GMT 0)
Hi C-guy, this is a tough diagnosis, but hopefully you'll respond well to treatment. This is such a good place to get info and advice.

I'm chiming in with the gluten free people, I think that it's really helpful. I think there is also something 'magical' about home made bone broth too.

I also have a suggestion for and alternative to your Powerade, try coconut water instead. I think the electrolytes may be helpful for your energy.

Have you been bleeding since May? Along with the Vit D, you could also get checked for low iron and low B12. I suggest you ask for your numbers, as the 'normal' range is not necessarily the optimal range. You can be on the bottom of the range and the doctor will say you're fine. I try to eat liver from pasture raised animals every week and I find it helps with my energy levels.

Good luck, I hope your feeling better soon.
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