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Recently Diagnosed With UC

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Ulcerative Colitis
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Posted 10/15/2011 7:44 PM (GMT 0)
Background: I'm 27, never really had any digestive issues... So a back at the end of August we got hit in the Northeast with a Hurricane and lost power for 5 days. Definitely a stressful experience to say the least. Approximately a week later I started feeling sick, never having even IBS before, I didn't quite know what was going on. Alot of cramping and urgency to go, but then I wouldn't be able to go. Symptoms persisted eventually leading to severe diarrhea and eventually blood in stool. Once I started to see the blood i knew something was wrong and went to see a GI. He suspected UC and gave me Canasa and Asocol to try but also wanted to look for parasites and possibly bacteria. Parasites and Cdiff came back negative but they found a bacterial infection called Aeromonas hydrophila. I was given cipro for five days but still was struggling and he decided to do an emergency colonoscopy to see what was going on. No hemmerhoids, polyps but severe UC. Obviously concerning since this appears to have been aggravated by a bacterial infection. I am on 60mg of prednisone (20mg 3 times a day) and 4800mg of asacol. Frequency dropped dramatically from 15-20 times to 4-5 times a day in just two days usage, but I am still seeing alot of blood (less abdominal pain). I guess my question is if UC was caused by an infection, do I have any realistic hopes of full remission after this course of treatment?
Posted 10/15/2011 8:21 PM (GMT 0)
Hello Jack, I've had UC since I was 18. Let me tell you the truth, I took antibiotics and it disrupted the bacterial harmony in my intestines, then I developed the same symptoms as you. I believe that flare ups are caused by a combination of a lack of rest for the digestive system along with stress on the nervous and skeletal system, plus an imbalance of the bacterial environment. Of course, I do not want to start any debates, that is my honest first hand opinion. As for the idea of a full remission, that is difficult to tell. Try being optimistic, when I first got sick the world turned inside out and I didn't want to get out of bed. I was depressed, it's normal. But what you say is what you get (Billy Talent agrees), so think positively even when you are down and out, and you will get back up. Unfortunately, there is no such thing as a full remission with UC but there are LONG TERM remissions that could go for years on in and then a flare up comes for about a few weeks and then you get back to a long remission, that is the reality of the condition. I wish you the best, and don't forget to watch what you eat (regardless of what pessimists say, your diet has a big role to play and you have to watch what may or may not trigger this hellish curse).

God bless you, I know how you feel, but hang in there. Things will get better, and never forget that the night is at its darkest the moment before the break of dawn.
Posted 10/15/2011 10:14 PM (GMT 0)
Did the doc say UC or did he say colitis?

You have an issue with c.diff and parasite...both of which can cause your symptoms. To declare it UC is a bit of an extension if you haven't been declared free of both.

UC can be "triggered", it seems by a few things....but caused? Whatever...has to set the process in motion.

Do you have the copy of your biopsy(s) results?

Welcome to the forum,
q
Posted 10/15/2011 10:19 PM (GMT 0)
he definitely diagnosed it as UC...  Never had a parasite, they just found a bacterial infection.  by then I was already exibiting all of the signs of UC.  They didn't want to do procedure while I had an infection, so we waited a few days for the cipro to clear...  they said the biopsy results would take upwards of a week though...

is the dosage of 60mg and asacol 4800mg typical?  can i expect the bleeding to stop anytime soon? 

Posted 10/16/2011 12:09 AM (GMT 0)
The bleeding stops when it stops, I wish I knew myself bud. But I'm in the same situation looking for a way out.
Posted 10/16/2011 12:39 PM (GMT 0)
jac91584,

Welcome to the forum. Sorry about your recent UC diagnosis, it sucks!

Whatever caused UC, infection, virus, or whatever IMO doesn't really matter, because the doctors will treat you with a combination of antibiotics, 5asa, etc...and it's not going to change.

I would caution you however that antibiotic use can lead to a major inbalance of  intestinal gut flora - which will worsen your symptoms.

The remedy there is to take some good probiotics, like VSL#3 - with 450 billion active cultures, made especially for UC.

As far as the mesalamines, I can tell you that they never helped me, and nor did the prednisone.

And yes, there is light at the end of the tunnel. Just because you have UC (as a result of virus or anything else), doesn't mean you can't experience remission, be symptom free, and feel well. I am, and many others are too. It just make take you a little time to get there. And hopefully you'll get there the easiest, painless way.

Posted 10/16/2011 12:41 PM (GMT 0)
 

BTW, here are some things  that have helped me go into full remission:

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) 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

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

11) 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.

12) 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).

13) 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, :()

There is no question that this is a tough disease to deal with.

The good thing is that you've found this forum, and you'll find a wonderful group of supportive folks here who've been in the trenches (no pun intended), can give you great advice, with whom you can vent as much as you want.

Good luck, and I hope you start to feel better soon. Let us know how we can help you.

Posted 10/16/2011 1:30 PM (GMT 0)
the one thing I have noticed is that since going on the steroids, while the side effects suck, at my peak I was going 15-20 times a day. Now it's anywhere between 3-5 usually. And it's always worse in the morning. I'll have my first BM and see bloody water, and then maybe 10 minutes later i will have another BM with no sign of blood. Then i am usually good for a while, with minimal pain, but I feel a little depressed/embarrsed about the whole situation which effects my mood obviously. I have yet to have a normal BM though as everything is usually diarrhea. The surgeon told me that because of the location of my colitis the canasa suppositories wouldn't really do much use. In terms of my blood work that came back he said everything was normal other than white blood cells being elevated (this is right before they identified the bacterial infection). During the 5 days of cipro i was on pro-biotics, and I am in the process of getting some that were researched extensively by a family member. I also have a GI follow-up Thursday where I can discuss some things with him.

http://www.amazon.com/Jarrow-Formulas-Jarro-dophilus-EPS-Capsules/dp/B0013OUKTS/ref=sr_1_6?ie=UTF8&qid=1318771711&sr=8-6 i was recommended these, can anyone comment on them?
Posted 10/17/2011 3:13 AM (GMT 0)
i've missed 3 weeks of grad school, the stress of missing school definitely affects my UC. I'm wondering if anyone has suggestions on how to get back to classes and have a 5 hour window without having issues. would timing prednisone/asacol dosage help?
Posted 10/17/2011 5:12 PM (GMT 0)
Are you using any rectal meds? did you talk to your DR about where exactly the inflammation was? Rectal meds (mesalamine enemas) are extremely effective at treating inflammation in the rectum and sigmoid colon. The oral 5-ASA meds don't really cover that well.

It sounds like you're doing pretty well on the pred, but you need to start a taper soon. Too much time on steroids is bad, and you've already been on it a month? A couple of weeks? It's going to take some time to taper down to zero. Perhaps it's time for a talk with your DR.
Posted 3/4/2015 8:42 AM (GMT 0)
HI Jac91584, I too tested positive for aeromona. Did the cipro work for you? What is your situation now?
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