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Posted 12/30/2011 6:45 PM (GMT 0)
I was just diagnosed with acute ulcerative colitis on 11/28/11 following a colonoscopy. I had been having pain, blood in stool and changes in bowels for a few weeks. Initially Primary care thought it was a flare up of Diverticulitis from colonoscopy 6 years ago, also have a family HX of diver.

I am currently on Lialda 1.2 GM bid and Canasa suppository at night. Also taking Metamucil 1 tsp once a day

I can go days where I am eating fine and then whamo I have occurrences of pain, cramping and some blood in stool.
I can not figure out what are my triggers and what aren't...eating a lot of chicken soup.

Questions: How long does it take for the inflammation to get under control??

It was noted that I had one lesion- will this ever heal??

How long after I eat a trigger food will I experience symptoms??

I had some weird body pains for a few days that have subsided, but was concerned as muscle pain was a side effects of Lialda.

I know it has only been a month since I started treatment, but would like others experiences. I will see GI Dr. next week. Thanks for any input you can give!!!!
Posted 12/30/2011 7:55 PM (GMT 0)
upstategal,

Welcome to the forum. Sorry you have to be a part of it, but this forum has been such a great form of support with caring people.


Questions: How long does it take for the inflammation to get under control??

That depends on alot of things, like diet, supplements you may be taking, your stress levels, etc...

It was noted that I had one lesion- will this ever heal??

IMO, yes it can heal if you feed your body an anti-inflammatory diet, and stay away from foods that set off your UC.

How long after I eat a trigger food will I experience symptoms??

Usually 24-48 hours, but it can also be as as soon as within a few hours - it really depends on how severe an intolerance to the food you have.

Here's what's worked for me:

1) Diet is key for me: I do the SCD diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: http://cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine powder 15 grams - for colonic repair. If you're having issues with urgency and diarrhea, then you'll need to take L-Glutamine powder 1 teaspoon mixed in a little water on an empty stomach, and that should alleviate your symptoms alot.

3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's and works much more effectively than all the mesalamines without the side effects.

4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

5) Drink lots of good water.

6) Get your vit. d and b12 blood work done, to see if you are deficient.

7) SCD diet - specific carbohydrate diet - many have had lots of success with it. If you can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free.

8) start a food journal and see what correlations come forth

9) There's a great app for keeping track of your symptoms, diet, meds, etc...

http://wellapps.com/products

10) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

11) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?

12) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.

13) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

14) Astaxanthin is a great anti-inflammatory

I think the more information you can have on UC and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()

Good luck, and I hope you start to feel better soon.

Let us know how we can help you.


Posted 12/30/2011 7:56 PM (GMT 0)
Hello and Welcome!
Yes one of the side effects of Lialda is body pain, it is one of the more rare side effects listed... but one of the side effects of UC is body and joint discomforts... I go thru those days where I feel like I am getting the flu with the body aches and horrid joint pain in my knees and after a good, long bath and rest it seems to help. My doctor doesn't know how else to explain it other than it happens a lot with UCers...

And everyone is different on the length of time for treatment to see improvement... have you tried adding in supplements? A lot of folks on here take supplements, and some may offer you some relief faster.
I take aloe vera juice and l-glutamine powder... it made the world of difference for me pretty quickly...
Best wishes!
Posted 12/31/2011 1:50 AM (GMT 0)
yes I am on rectal meds Canasa at bedtime, also just had blood work done so Dr will have for appointment 1/4.

Actiivia yogurt is tolerated well. I do have some slippery elm capsules that I take with a glass of warm water...can I open capsules and put in the water directly or should I buy just a container of powder??

I drink lots of filtered water, have given up my caffeine free diet coke and all artificial sweeteners...is Truvia just as bad?? I think with the holidays and visiting family and friends I have deviated from my usual diet enough to cause flare up. I feel that the stress in my life is at an all time low. I retired from a stressful job 4/11 and work part time at our school...love the job.

I will check into the sites recommended and see if the Dr. will consider the other meds reco. Thanks for the info!!
Posted 12/31/2011 3:12 AM (GMT 0)
Hi,
Sorry for you and welcome. there is so much to learn this first year for you....I had HORRIBLE body pains that started last year, then went off gluten and after about 2-3 months they are basically gone, but it was real bad there for a while. I have taken Lialda for about 4 years without a hitch. I still flare, but not as bad and not as often as BEFORE my diagnosis and lialda. I was told I have hemorrhoids and IBS for about 15 years prior to my diagnosis. I'm not a big fan of most MD's and I'm a practicing RN here in the state of Minnesota.

I have had lesions I thought would never heal, but they did with lots of TLC and "good dietary behavior". Canasa at bedtime and Lialda as prescribed really did the trick. I take quite a few supplements during and between flares because I feel that they support my immune system and make my flares less severe and further between episodes. And they don't make me feel worse, so I gotta try to help myself a bit too.

I've had flares that last a few days to a few months....it just depends on so many factors...my doctors assure me UC is not affected by diet and I say B.S!! I know I have trigger foods and that's all that's important. I stay away from them and do better.
For me it is: No raw apples or any fruit with skin, no melons or raw veggies. NO NUTS or POPCORN. A tiny eensy handful once in a great while is ok, except in a flare.

I Stay off dairy products at all costs, all the time; Stay off all wheat/gluten products at all costs, all the time. I have ONE cup of coffee a day, and when I'm really bad, I'll skip that and drink black tea to get a touch of caffeine ( I hate the headaches from withdrawal).
Take your prescribed medications. Drink a lot of water, gentle tea's with honey....herbal are best.
Soups are great but stay away from red meat if possible.
I like white rice made with chicken broth instead of water. No raw fruits or veggies except if they are in a smoothie or a juice of some sort. Low fiber, for real. I use diaper wipes for my tender bum and I take epsom salt tubs once or twice a day if my bum is very tender and raw.
I rest a lot and lie down often to get the pressure off my bum.
Try to get gentle exercise daily just to keep the body moving. Even if you have to stop and poo, try.
Then I wait, and wait and wait. If you have to take a week off from your job then do it to see if the more you tend to this flare
then maybe it will quietly go away....
Much luck, hang in there, you can live with this!!
Posted 12/31/2011 12:32 PM (GMT 0)
Welcome to the forum!

InSoFla has a very good list for you but I would try adjusting your diet first then trying out the other stuff one step at a time. Keep a food/suppliment/UC status journal. It is so important and will help you put 2 & 2 together should things suddenly improve or get worse.

Here is a list of things I avoid because they cause me to flare up. You might be more tolerant about certain foods. Everyone is different but most of us can relate to one item or another.

List in order of flare power:
1. Eggs - When I first got UC i was eating an omelet every morning and I couldn't understand why I had huge problems every time I ate breakfast. Once I figured this one out I reclaimed my mornings again!
2. Caffeine (even decaffeinated drinks still have caffeine in them and can cause issues)
3. Lactose - Milk, cheese, yogart. Some cheeses are ok in small amounts. I can handle pizza just fine because Mozzarella has very little lactose.
4. Fake sugars - Sorbitol is the worse. If it says "sugar free" or "no sugar added" you better check the label.
5. Nightshades - (some hot peppers and tomatoes ok)
6. Broccoli - The gassiest veggie out there. Avoid it at all cost! (Some can tolerate it though)
7. Too many fresh fruits or veggies - I love fruits and salads but too much of it and problems will happen.
8. Foods high in fiber - Although the doctors want me to take in more fiber, I dont react well to fiber rich foods.
9. Alcohol - I love beer but having UC means either giving it up, or finding a beer that doesnt react with your UC. Dark beers are all I can drink and I only have about one a month if things are going well
10. nsaid drugs - Yes they help with the pain, but they make your gut bleed which makes things worse. AVOID! Consider taking Tylenol for headaches. It might not work as well but it wont conflict with UC.
11. Foods or drinks rich in sugar - I rarely drink soda's because they make me gassy but when I do it has to be one with real sugar in it. I also stay away from lots of cakes, pies, cookies and other sweets. Too much and your asking for trouble.

I hope this list helps you out. Again you might not have problems with all of these foods on my personal list so test them out. If you have an intolerance, you will know within 10min - 24 hours. Sorbitol gets me in just 10 min!
Posted 12/31/2011 1:28 PM (GMT 0)
upstategal,

I'm glad you can tolerate yogurt, many of us cannot.

I do have some slippery elm capsules that I take with a glass of warm water...can I open capsules and put in the water directly or should I buy just a container of powder??

You certainly could try opening them and putting them in a little water, but I would recommend your getting organic slippery elm powder as it is most effective.

Also, you don't know if your capsules of slippery elm are organic or how long they've been encapsulated for, no?

Are you taking any probiotics?

I hope your doctor is checking your blood levels for vitamn d3 and b12?

Posted 12/31/2011 1:58 PM (GMT 0)
upstategal,

I drink lots of filtered water, have given up my caffeine free diet coke and all artificial sweeteners...is Truvia just as bad??

That's great! But anything artificial like sweeteners and margarine the body cannot recognize. IMO, you're much better off adding sugar, at least your body knows what that is.


 

Posted 12/31/2011 5:07 PM (GMT 0)
InSoFla:

I have been hearing a lot about Chia seeds. do you use this for increased fiber??/

What is LDN??? Is this a prescription med?? I have left sided colitis with rectal inflammation as well. I don't experience a lot of D, but do have cramps and some pain.


I tried Align even before I got my DX, did not see where it did much for me. My GI Dr. said it is works best for those with a lot of gas which I generally do not experience. I looked up the VSL#3, but it seems pretty costly.


I also take calcium with Vit D3, flax seed oil capsules 1000mg ( essential Omega-3's). I also have allergies and asthma so take Singulair, Zyrtec, Qvar ( pretty well controlled, have had since very young)


Thanks again for all your help!!! From reviewing the other posts, I feel my case it much milder compared to others....not sure why I developed this at 58!!!
Posted 12/31/2011 8:02 PM (GMT 0)
upstategal,

Chia seeds - are great not just for fiber, but also for added:protein, omega 3's, calcium, and alot of other nutrients and minerals as well.

I take them daily, 1 tablespoon in each protein shake (twice daily at a minimum).

LDN is low dose naltrexone, yes you would need a prescription for it. You might be able to get it prescribed through your GI if he/she is open enough to it (some GI are), otherwise you'll have to get it through an osteopath, holistic doctor, or perhaps an open minded GP.

Do you have the links for LDN, if not I'll post them for you?

Align is not a great probiotic IMO, however VSL#3 is made  especially for UC with 450 billion active cultures, yes it's pricey,but you can get your doc to write you script for VSL#3 DS (900 billion cultures) and you might only have a small copay. Ask your doc.

Let me know what other questions you may have.

 

Posted 1/1/2012 5:56 AM (GMT 0)
InSoFl:


Will check at appointment re: VSL#3, No I do not have link to LDN, please let me know what are best. I will try the Chia seeds and will get some slippery elm that is not in capsules at local health food store.

Thanks again for all inout!!! This is a strange disease, one I never thought I would ever have to deal with, especially at 58 yrs old!!! I am very active and this disease can sure put a limit on activities at times!!!
Posted 1/1/2012 1:06 PM (GMT 0)
upstategal,

Here are the links for LDN and my story on LDN, hope this helps you.

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too. Bottom line is it works!

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL.

They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease at:
www.ldndatabase.com

Hope this helps. Good luck to you.

Please let me know how it works out for you.

Posted 1/1/2012 9:39 PM (GMT 0)
Just one suggestion....you're not on enough rectal medication. I would suggest you ask the doc for the retention enemas of 4g Rowasa and use the suppository maybe during the day or for tapering the Rowasa.

The solitary ulcer isn't your only concern, it's the continual inflammation as well.

My normal suggestion as usual.

Welcome to the forum, by the way!
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