HealingWell
Search Close Search
☰

Hi everyone

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/27/2013 11:25 AM (GMT 0)
Hello everybody. I never thought I'd register in a forum like this - always been more of a car and video games guy, but here I am. I was diagnosed with UC in October 2012 and over the last 6 months the disease has gotten the better of me a few times. It started off with rectal bleeding about two years ago but since the BMs were normal, I put it down to stress and diet, although I had seen a GP twice during that period and nothing was diagnosed. The bleeding then stopped altogether ... until about August last year when I found myself needing to go to bathroom more than once a day. Bleeding soon returned and for a while it was pretty severe by my estimations. Long story short I visited a specialist and was put on Asacol 400mg 4 tablets twice a day. I should also mention that I as put on accutane for acne treatment due to an unfortunate return of acne in my early 30s.

Since then I have had my good and bad days and in a lot of ways felt that my quality of life has been compromised. I often experience urgency and have had 'accidents' - my symptoms seem to be triggered mostly by 'events' - eg walking to work in the morning makes me extremely anxious as I won't have access to the lavatory for 15 minutes. Other things like being at the gym, or even washing the dishes (as my hands are 'tied') are a great source of stress for me. I am by nature a very anxious person and get stressed easily ... which I realise doesn't help with UC at all. There are days when I feel more or less ok, and there are days I just can't cope. I have told my family about this and I just don't they understand the severity of this thing. I wish I could feel sad or angry about this but to tell you the truth I am so consumed with this thing it's hard to know how to feel. Knowing that this is chronic and that I may have to deal with this for the rest of my life is scary. I just don't know how to cope sometimes and will do anything to have my old life back.

Good to get that off my chest ...0
Posted 4/27/2013 12:23 PM (GMT 0)
Hello,

Wow, it's as if I'm reading myself back when I was diagnosed in 1980. The only difference is there were no computers then, so I couldn't vent to anyone like this outside of family. But you are me.

I went through so many good and bad times (look at some of my posts). If I were you (me) again I would immediately look at diet first and then dealing with stress second. They really are both equal to me. And then in the background just do what the doctor is saying to do. I give the doctor's the least weight. :)

You are the only one that know what makes you the least stressed, and that is basically the fact of life we are all stuck with. I've found if I am true to myself, have some kind of spiritual belief I can fall back on (I won't get in to religion here for obvious reasons) , that is all that really matters.

As for diet would I eat lunch at Taco Bell and then go on a five mile walk that had no restrooms I could run to? Probably not, but there are other things you can do to give you confidence. For one you can always really decrease your eating or be really careful about it just before trips, etc. Some over the counter things like GasX, Immodium also give you added confidence. Avoid coffee, beer before those times, and buy some Prevails (look them up) then wear some regular underwear under them and stretch-type Jockey underwear over them. No one can tell. It's just a real confidence booster if you're afraid of an accident. I've used them but never had to use them if you know what I mean. But I looked at them and basically you can just rip them off at the sides and throw away easily if needed without removing your pants. Whala! Also carry some water, kleenex, even a change of underwear if you want in a knapsack. Believe me I've thought about these things over the years!

As for family you can't change them or convince them how bad you are. You're right, they don't get it, but believe me, when they get really old - if they do - they'll start to get it.

One last thing. I just got a new position and have to travel a lot, but doing the things I mentioned above has given me a new confidence. Also my sister said "John, no one really cares if you had an "accident," only you are the one who cares." I've thought a lot about that and it's true. In fact, here in the city people are lying in the street covered in dirt, dirty pants, etc. and people just walk right by as if they aren't there. Yes, some people do care but most just mind their own business and are worried about themselves. The other day I gave a lady sitting against a store $10. She looked so down on her luck, covered in dirt, bad teeth, and just really broken. She looked up after as I was getting in my car and smiled at me. It really felt good trying to help someone rather than just myself for a change. Again, I won't get into religion but you probably understand what I'm saying.

Email me any time if you need.

John
Posted 4/27/2013 12:58 PM (GMT 0)
Silver,

Welcome to the forum.

I am glad you found us, although I am sorry you have to be a part of this terrible club.

You've gotten some good advice already.

There is no question that getting this diagnosis sucks, it sucks big time!

I know that when I was first diagnosed I was overwhelmed with tons of emotions, anger, grief, depression - basically the 5 stages of grief.

And that's ok. It's part of the process. Please don't get down on yourself about any of it. Learning to cope with this disease is a huge thing, and at times, especially as a newbie, OVERWHELMING. We're here to help.

Silver, if you can write a sig, it will help us all answer your questions- as to dx, meds taken, etc....

If anxiety is a big issue in your life, I would recommend you ask your doc to prescribe xanax ( even a minor dosage can make a huge difference in the ability to handle stress and anxiety), as it will help reduce the anxiety, but it also has a "quieting" effect on the whole intestinal tract. I'm not suggesting you become dependent upon it, but use it wisely in these initial months until you get used to managing your disease.

Also, there are many things you can do in addition to meds to help control your symptoms. I found the greatest symptom reducers to be:

slippery elm powder it coats the whole alimentary canal, l-glutamine amino acid powder to handle the diarrhea ( and also for long term colonic repair), probiotics are key as well, are you taking any of these?

Then when was the last time you were checked for vitamin d3 levels being low? There's a big correlation between low levels and IBD.

And then there is diet modification, specifically being gluten and dairy free - I think you may be surprised at how big a a difference these things may make in reducing accidents, risk of accidents, and overall symptoms.

It's tough at first, but then you get used to a new way of eating. I am on the Paleo diet, anti-inflammatory diet. Do I ever cheat and have pizza? You bet - but I take a "cheat" remedy to ensure I won't pay too heavy a price.

As for the bleeding, the ONLY thing that helped reduce my bleeding to ZERO was LDN, low dose naltrexone ( there's a post about it on the UC resources page, so check it out) - a cheap drug with almost NO side effect.

Anyways, if any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 4/27/2013 1:09 PM (GMT 0)
Hi InSoFla!

I also liked your comments. Could you please tell me exactly how you use slippery elm and l-glutamine? In What quantities and how often? I am very interested in always trying to get better! :)

Yes I cheat too!!!! (as I drink my second cup of strong coffee with cream). Today is my indulgence/risk day. I can be a little extra risky on weekends.

John
Posted 4/27/2013 1:23 PM (GMT 0)
John,

Hello. Nice to hear from you.

I use slippery elm powder every day ( organic kind).

Before remission, I used to use it 3 x a day, after each meal.

Now I just use it once a day after dinner.

This is the daily "cocktail" I make:

- 1 teaspoon of slippery elm powder

- add to room temp filtered water, about 1-2 oz.

- add 1 sachet of VSL

- you can add a drop of honey if you like

mix all really well, squashing the lumps of slippery elm against the glass with the back of the spoon to smooth out texture, it should be "gel" like consistency

and drink it down

BUT if it gets too thick, then add a little more water

Note: that you have to take slippery elm 2 hours apart from meds to prevent intereference

As to l-Glutamine amino acid powder:

1) if you have diarrhea, take 1 heaping teaspoon (about 5g) in a little water or juice on an empty stomach

2) for long term colonic repair, take 10-15 g per day ( I add it to my morning protein shakes)

I hope this helps. Let me know if you have any other questions.

And feel free to email me if you like.

:-)  

Posted 4/27/2013 2:27 PM (GMT 0)
VSL? And is slippery elm a fiber like thing like psyllium husk powder?
Posted 4/27/2013 2:35 PM (GMT 0)
No, it is not.
Its action is to coat the whole intestinal tract.
VSL is a probiotic many of us use.
Posted 4/27/2013 2:50 PM (GMT 0)
My personal view is that remission should always be the goal. This is not possible for everyone but I don't understand those that live with urgency, pain and limited life options for years without trying different medication.

Prednisone is generally 8 weeks at the time (if you react well) and while the side effects can be bad living with a constant inflammation is also very damaging to your body. Not to mention the damage to your social life and self esteem.

So why not go with a standard pred and then try to remain in complete remission with maintenance meds (and diet/supplements one feels works)?
Posted 4/27/2013 3:00 PM (GMT 0)
Welcome to the community!
Posted 4/27/2013 3:19 PM (GMT 0)
Hi chcl...

Your perspective is very much like my friends and my moms. They always say things like "hey, if there is a pill to help me then I'm going to just take it!!" Then another perspective (like me) is to try to avoid all medication and just try to wing it "naturally."

Not sure why there are those different perspectives. I think controlling people (like me) want to somehow prove to themselves they can do it without medication. The other type of people find it easier to relinquish control to medication or whatever it takes medicine-wise. Actually I understand both perspective and believe both points-of-view help each other.

Isn't UC just so much fun?!?! (tongue-in-cheek) :)

John
Posted 4/27/2013 3:37 PM (GMT 0)
I can understand trying to deal with it without medication in some way but I do believe it is easy to slowly getting worse and just accepting that life. Often when I get a flare I get a bad one (20-30 bowel movements, blood, pain etc.) so there is no option going with anything else than pred or something like remicade.

But I have also had a small flare that got slightly worse over time but that tends to become normal life. Suddenly it is normal to always need to know where a bathroom is. Saying no to friends because they want to do stuff and instead isolating yourself at home. Starting to eat more and more limited foods because you might feel slightly better, even if it is difficult to measure. Your energy levels go down because you are in a constant state of inflammation.

This hurts your body. Inflammation is connected to an increased risk of cancer, not only in the colon, but in other places organs too. This hurts your self esteem and it hurts your social life.

I understand people living like that because sometimes there are no other options. The medication does not work, they react badly to it or the side effects are just worse than the disease.

But not even trying once with pred for example is what I have a hard time understanding. You have a reasonable chance for a remission (for an unknown time) and you won't have to take it for very long.

But yes, my perspective is probably colored by the fact that I tend to get so sick and pred works reasonably good on me.
Posted 4/27/2013 5:41 PM (GMT 0)
There is an extremely small percentage that can get their UC under control or in remission by going natural. It's worth a shot but the odds are against you.
Posted 4/28/2013 4:40 AM (GMT 0)
Hi..welcome to the forum. I suggest you go to your GI and request rectal retention enemas to help deal with your flare, and ultimately the urgency.

Where exactly in the colon is your UC located...limited or throughout?

I suggest you also get copies of your c-scope and all blood tests so that you have them for research and obviously for your own research.

As far as family not understanding...seems a norm...
It's good you're not angry about it.

q
Posted 4/28/2013 11:51 AM (GMT 0)
Silver,

One more thing, you may be aware that Accutane causes UC, and there are some lawsuits around addressing that. You may want to speak with a lawyer who handles Accutane suits.

 

Posted 4/28/2013 12:14 PM (GMT 0)
I didn't realize that that crap is still available. I guess it works well but at what price?
Posted 4/29/2013 8:29 AM (GMT 0)
Thanks so much guys, especially those who have shared their experiences and advice with me
. It means a lot and it really helps to talk to someone that know what it's like to be suffering from UC, it's almost therapeutic and alleviates a lot of the stress and pressure for me. As for my condition I am having my first colonoscopy on Wednesday so hopefully will know more then. Thanks again everyone.
✚ New Topic ✚ Reply