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Newly diagnosed with Left Sided Colitis,lots of ???

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Posted 12/16/2011 4:09 PM (GMT 0)
Hello all,
Am a 63 year old woman and have just been diagnosed with left sided colitis, and have lots of ????. I had problems in march 2011, and had both a colonoscopy & barium enema with no true answers, partially due to the dr getting ready to retire and wanting to hand off his patients. met a new dr, who agreed that we's take a wait & see attitude towards my issues since no symptoms then present. fast forward to last Thursday night, when violent cramps/bleeding returned suddenly...miserable all weekend, and told to survive or go to ER. Prepped for another colonoscopy on Mon...threw up all preps/but hadn't been able to eat all weekend so my system was pretty empty. test results NOT official, but dr has pics of my colon and said it was left sided colitis...come back in 3 weeks. Am on Asacol HD 800 mg 3x day until I see dr again on 1/5/12. Pain is better, cramps/issues still there (but less violent)....SO
am on internet looking for more info/advice...
Hopefully, others have more experience with this and can give me some insight on how this diagnosis will affect my life....thanks in advance. confused
Posted 12/16/2011 4:25 PM (GMT 0)
Everyone is different but mine went from left-sided uc being diagnosed in Jan 2008 to universal uc w/crohn's now - I try Remicade next week

Like I said everyone is different - you may not ever get much worse than what you are now but this disease is really a crap shoot and no one, including your docs are going to be able to predict how your disease is going to progress
Posted 12/16/2011 4:44 PM (GMT 0)
I think it might be useful to ALSO have 5-asa (the stuff in Asacol) as a suppository or enema. This is a more direct attack on the left side, and may keep it from spreading to the whole colon. It will also quickly decrease the urgency due to far-left irritation.

Several IBD centers and the Crohn's & colitis foundation, have informative web sites. This one (http://patients.dartmouth-hitchcock.org/gi/inflammatory_bowel_disease_center.html ) has a pretty good rundown of the different kinds of medications used. There is also a radio interview with the head doc that has about 30 minutes of fluff and 15 minutes of information, but it might be worth a listen - especially to help sort out IBD from IBS.

Meanwhile eat a low-residue diet. You can put fiber back in as you improve, give your colon a rest for now. Also eat anti-inflammatory foods and herbs (e.g., spinach, turmeric). You can try probiotic supplements, but these may work best after the colon quiets down a bit. IF you are bleeding, be sure to get checked for anemia. If you are not able to keep food down, get checked for minerals/electrolytes and vitamins (e.g., calcium, potassium, vit-D). Be careful if iron supplements are prescribed, because these are very irritating to the GI tract. You need the iron, but your colon sure doesn't.

Some People respond to 5-asa drugs in just weeks and go into remission. Some do not. (I did not.) I am slowly responding to oral/rectal 5-asa over a two year period, but I have had to go on prednisone, and may have to introduce other drugs like an immunosuppressant (e.g., 6mp) to get off the prednisone. You could be fortunate, or you could have a long ride.

Some folks put a lot of stock into balancing the gut flora, and eliminating food irritants, with special diets like the specific carbohydrate diet (SCD), but others report little benefit. There are some other alternative therapies you can investigate if you do not respond to 5-asa, or get worse.

Keep reading, keep asking questions.

Post Edited (DBwithUC) : 12/16/2011 9:48:08 AM (GMT-7)

Posted 12/16/2011 5:53 PM (GMT 0)
ITA w/DB. A mesalamine enema will get you more direct medicinal benefit and help you get to remission faster than relying only on the oral meds. It would be great if you could stamp out this flare without resorting to prednisone, but that option is always available to you. After reading this forum for a long time it is surprising to me that so many UC patients are not given enema prescriptions - I am beginning to think that GIs are too embarrassed to suggest them!
Posted 12/16/2011 6:41 PM (GMT 0)
I too have left sided UC. I'm on Lialda and also the Rowasa enemas. When I flare I take the highest dose of Lialda that I can and use the enemas nightly. I would suggest putting a call into the dr for some enemas (am suprised they didn't put you on them) as it can treat the left side better. The left side can be more difficult to treat and I would do that before taking a steriod or moving on to other meds. Both meds helped me stop my initial flare in its tracks pretty quickly but everyone is different.

Welcome to the forum!
Posted 12/17/2011 1:26 PM (GMT 0)
peripat,

Welcome to the forum.

I am sorry about your recent diagnosis.

There's no question UC sucks! The good news is that you've found us, and it seems you're already searching for more info on UC, and knowledge it power. 

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, :()

 

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 15 grams - for colonic repair.

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.

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

 

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

Let us know how we can help you.


 

Posted 12/17/2011 1:43 PM (GMT 0)
I am sorry about the diagnosis but happy ot hear the asacol seems to be helping a bit. Asacol 2400mg a day is a maintenance dose. Usually during a flare up like you're experiencing, youw ould go up to 3600 or 4800mg. It may be unnecessary if you improve on 2400mg but it is an option you should speak with your GI about if you need additional medicine. You could also benefit from mesalamine enemas and suppositories with left-sided UC. I am surprised the GI didn't mention them when he gave you Asacol. I think some GIs think we don't want to be bothered with rectal medications but in my opinion, they are a lot better than dealing witht he symptoms. Please ask your GI about Canasa and Rowasa and give them a try.
Posted 12/17/2011 4:33 PM (GMT 0)
Thanks for all the wonderful replies so far...I am due to go back to see him 1/5 to go over results & get the "official diagnosis"...he told me I had LSC based on pics taken during the emergency colonoscopy...but we haven't had the sit down & go over session yet. I am making a list of all questions/concerns I am learning about here, and am altering my diet to eat more anti-inflammatory foods (so far, chicken & rice have been my main food, but I am trying some of other suggestions found due to this forum's suggestions. Thanks in advance to all who have responded...I am being positive and hopefully, will be a better patient for my own health betterment due to all of you.

Post Edited (peripat) : 12/17/2011 4:15:04 PM (GMT-7)

Posted 12/17/2011 6:44 PM (GMT 0)
Is that correct - you have to wait until May to see this doc again? Or maybe it's a typo and you meant Jan. 5?
Posted 12/17/2011 6:55 PM (GMT 0)
Welcome to the UC forum, but sorry you got hit with our nasties! Another good online source of info on many aspects of our ailment: Salix Pharmaceuticals patient newsletter & its archive, from 2003 onward. If you have urgency the retention enemas would likely help to relieve that. There is also a convenient low-dose steroid retention foam-- called Cortifoam, which can be very soothing to the inflamed rectum. The foam generally stays where you put it, but the liquid retention enemas can be harder to hold in, especially when you 1st start into treatment & have more discomfort & frequent bms daily. Best wishes for you to feel better soon! Come back here whenever you feel the need for more advice & support. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 12/17/2011 11:15 PM (GMT 0)

kazbern said...
Is that correct - you have to wait until May to see this doc again? Or maybe it's a typo and you meant Jan. 5?

Sorry, it was a mistake...go back to see him on Jan 5th....
Posted 12/18/2011 3:08 AM (GMT 0)
I am surprised he is even making you wait that long for an appt. Especially if you are having trouble eating. How many times a day are you going.
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