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New Member, What is working for me and UC

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Ulcerative Colitis
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Posted 10/14/2015 2:45 PM (GMT 0)
Hi,
I'm a long time lurker on this forum, but this is my first post. I wanted to share a little of my story and what is working for me right now.
I was diagnosed with UC when I was 13 - back in 1992. Got it under control after hospitalization, steroids, and sulfasalazine. 1 minor flare in 2000, quickly resolved using SCD and sulfasalzine. Total remission with no drugs until Feb, 2015. Only symptom for about 2 months was pain on left side. Dr. didn't think it was UC because was only symptom, got progressively worse until I ended up in ER. Did CT scan that showed mild colitis. They gave me Cipro and Flagyl. Keep in mind - no D until I started taking these antibiotics. about 4 days in I had terrible D and nightmares, anxiety, pain in joints etc. I suspect from Cipro. Dr. took me off Abx put me on suflasalazine, also started seeing naturopath and she put me back on SCD,S Bouldarii, and L.Glutamine. Pain and D started to subside. Got terrible joint pain and tinnitus from sulfasalazine, which never happened before. Dr. took me off it and sent me to GI. GI said I was fine with no drugs and sticking to diet. He wanted me to do a colonoscopy, but I have terrible, terrible anxiety and just couldn't go through the prep. Cancelled it.
Fast forward to today, about 7 mos after flare, and this is where I am at: Virtually no symptoms at all. No D, No B, No M. Very occasional mild pain in left side. I have 1 formed poo - about 4 on the Bristol Scale daily. This is what has worked:
1. SCD, I am quite strict, I have a couple cheats, like I will eat Hellman's Mayo, which has a bit of sugar in it, occasionally.
2. I know this is controversial, but I started smoking again. I had quit for 2 years, started smoking 4 cigs per day. GI, GP, and Naturopath all on board with this treatment.
3. Daily yogurt made per SCD instructions.
4. S. Bouldarii daily
5. Blueberries every morning. This seems weird, but I notice that they help a ton. I think I read recently someone else having good luck with blueberries too.

That's it! I am scared to death about having to take any drugs again because of the side effects I experienced. I also don't know what to do about colonoscopy. I am literally terrified to do it, the prep mostly. Also, since I am following strict SCD, I have no idea how it would work out, since I couldn't eat nuts, veggies, etc - which make up about 90% of my diet the week before. I'm feeling pretty comfortable skipping it, even though my GI really wants me to do it. I had the CT scan, it showed very mild colitis on my left side. That's good enough for me right now.
Posted 10/14/2015 3:31 PM (GMT 0)
Being anxious about scopes and medications is going to cause difficulties for most uc patients, as they are a necessity. Do you take anything for your anxiety?

Flexible-sigmoidoscopies are much easier preps (just two fleet enemas) than colonoscopy is. Something I would ask about.

Probiotics help many.

Not sure sulfasalazine caused jount stiffness or pain, as it typically helps reduce that in most. Likely unrelated/coincidental. Especially since it helped you before without causing that.
Posted 10/14/2015 3:43 PM (GMT 0)
I don't take anything for anxiety, I'm a major med. hater. I get side effects from everything, so I have anxiety about taking anxiety meds... I had no idea they could do a flex-sig, it's never been suggested, I will have to ask about it. Thanks!
Posted 10/14/2015 3:50 PM (GMT 0)
I'm with you on colonoscopies cause major anxiety, nobody looks forward to those things, but they are incredibly helpful and needed. I hate the thought of them from prep, to the IV (hate needles) to the actual procedure - it just takes place in somewhat of a private place that is embarrassing to have people poking around at. My other hate of colonoscopies is they have you lay on your left side. I broke my left femur and my pelvis when I was younger, so laying on my left side is actually quite painful, do you think the GI gives a darn about my discomfort regarding this issue? Uh no they don't, which just adds to the misery of the whole process. I hate hate hate doing them, but I know one should do them and one would be quite dumb not to have them done with this incredibly dreadful disease. I'm due in a year and half assuming no other issues rise up, and yes I'm dreading it every single time I think about it, but it will be done whether I like it or not or even if I mentally breakdown about it, it must be done for at least the peace of mind and information that it provides.

P.S. a flex Sig doesn't go all the way through the colon, if it has been well over a decade since your last colonoscopy and you have been diagnosed with UC chances are a GI won't want to do a flex-sig, you seem young still so there is a small chance they will do it instead but I wouldn't think so.

Post Edited (Bad Gut) : 10/14/2015 9:56:22 AM (GMT-6)

Posted 10/14/2015 5:18 PM (GMT 0)
With the length of time that you have had UC, I also think you should have the colonoscopy if you haven't had one in the last few years. Having UC raises the risk of developing colon cancer. Wouldn't it be better to know for sure that you are well, than to risk developing cancer and not finding it until it had already spread?

Some of the meds for UC are very serious, but I know that if I need to I will go on the more powerful meds rather than risk living with inflammation that can cause life threatening problems. If your UC is mild and can be controlled with mesalimine meds, you would be doing yourself a favor to take them because there seems to be evidence that these meds help lower the risk of developing cancer.

I use homemade nopal water in conjunction with Asacol HD and that combination has put me in remission and hopefully it will keep me there. I definitely recommend the homemade nopal water as a cheap, safe and effective (though very slow acting) treatment for mild UC when meds alone aren't quite enough. There are several threads here that talk about how to make it, where to find the nopales pads and how much to drink.

Hope you continue to do well!

(But I also hope you suck it up and get the scope done just to make sure you 100% well)
Posted 10/14/2015 5:19 PM (GMT 0)
I agree with the others that you must go through with the scope. A sigmoidoscopy is good for occasional check ups but if you have not been scooped in ten years it is imperative that you do so.
If you cannot tolerate drinking the prep they can Adminsiter it via a gastric tube.
Usually a naso-gastric. This involves inserting a small tube through your nasal cavity it will lead to your stomach.
This will allow them to give you the prep without having to taste it.
Following a low residue diet the week before and than only liquids two days before and than only clear liquids the day before should make the prep easier ( there will be less stool, so less pooping and diahrrea)
A ct Skan will not show polyps or displasia and having uc is a big risk for colorectal cancer.
Posted 10/14/2015 6:42 PM (GMT 0)
honestly, we ALL HATE COLONOSCOPIES but we have to get them if we want to stay on top of this disease. it is the only way to really know how your colon is looking even if you are having no symptoms.

i had one this year when i was in remission and it was much easier to have done than when i was flaring. it took about a month to bounce back because the prep really inflamed my butthole but i feel much better knowing that i dont have colon cancer.
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