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End Of My Rope...And It's Only Been Three Months

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Ulcerative Colitis
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Posted 8/5/2010 7:07 PM (GMT 0)
Hi Everyone,

First, I can't tell you how happy I am to have found these forums.  I'm recently diagnosed, still figuring out medication, and really happy to see that there are people who understand what I'm going through.

I think, more than anything, I just need a place to vent for a moment.   My (amazing) husband doesn't understand, my mom keeps telling everyone she bumps into about my UC, and my friends are ignoring that there's something wrong with me.  I'm tired, feel isolated, like I can't do the things I love doing, and I'm just tired of feeling bad.  My stomach doesn't hurt that much, but I have constant diarrhea, occasional cramping, and ridiculous urgency. 

As it stands right now, I'm taking Asacol HD 800mg tablets four times a day, and I'm supposed to be using 1000 mg Canasa suppositories, but because I have consistent watery and bloody BMs, so I don't actually get the full effect of them.  I'm trying to figure out what foods, supplements, etc. I should/shouldn't have, but I'm having zero luck so far.   I don't know whether I should try probiotics, cut out gluten or milk, or if there are other medications I need to try out.  I have a follow up appointment with my gastroenterologist at the end of the month, as well as an appointment with a UC specialist, but I need SOME relief before then.

One of the books I read compares a UC diagnosis to the five stages of grief - Denial, Anger, Bargaining, Pain, Acceptance - and I don't know where I am in there.  I just know that I'm sad, and ready to start feeling like a human being again.  Does anyone out there have any suggestions, thoughts or tips for a newly-diagnosed UC sufferer?  Many, many thanks in advance for your help.

________________________

UC Diagnosis - June 2010

UC Medication - Asacol HD 800mg tablets four times a day and 1000 mg Canasa suppositories.  Allergic to Apriso (insane hives)

Other Medication - Prozac, Adderall XR, Birth Control 

Occasional Medication - Ativan, Xanax

Posted 8/5/2010 7:15 PM (GMT 0)
Hi there and welcome to the forum. I'm glad you found us but sorry to hear of your UC diagnosis. I can definitely remember how scary and uncertain it was to first be diagnosed with this disease. It does get better.

Asacol combined with Rowasa are what helped me the most. You might ask your gastro. doc about switching from Canasa to Rowasa enemas. It can be hard to retain them at first but it gets easier and it's not as bad as it sounds. They really helped me with the urgency and bleeding.

Many people have success with probiotics. I can't really tell if they've helped me or not, but it's worth a try if you want to. Primadophilus Reuteri by Nature's Way is one that I've taken as well as Ultimate Flora Critical Care. You would want one that is refrigerated and that has a high CFU count listed on the bottle.

Hang in there!
Posted 8/5/2010 7:36 PM (GMT 0)
Welcome, NOLA!
I am one has had definitely been helped by probiotics, but it took some exploring to find the ones that best helped me. I tried several kinds that did nothing for me first (and all were recommended by GIs.)
Some people can't tolerate any fiber, even soluble, but I find my condition helped by it - Metamucil. For me it kind of glues the poop together and adds bulk, lessens the watery issue and the involuntary spasming/pooping issues.

We all have different foods that cause us issues when we're flaring..... when flaring I need to stay away from anything raw (fruits, veggies) or scratchy (corn, popcorn...) or gassy...really tough in summer!
When I'm not flaring I can seemingly eat anything. But, we're all different - a food journal is a good place to start!
Posted 8/5/2010 9:11 PM (GMT 0)
As far as probiotics, I took culterelle for about a week. After the first 3-4 days, which I believe was a terrible die off, my bms became formed and stayed that way even after I discontinued the probiotics.

A couple of things I learned here was: mesalamine enemas at night, steroid enemas in the morning and strange colored bms are now the norm (even the completely formed, white bm - I called it my albino poop).
Posted 8/5/2010 9:37 PM (GMT 0)
Hi NOLA!  You've come to the right place to both ask questions and rant!!

Ok, whew, first...deep breath...it will get better, you just have to find what works for you.  One of the most frustrating things is that no one reacts the same to anything so it is a bit of a personal journey but we are all here to help along your way.

Here is what I've found for me.  What I eat has no effect on anything.  I try to eat fairly healthy just to be healthy but as far as my UC, it doesn't matter.  BUT, that being said, I tried gluten free and dairy free to find out.  So you may want to try that just to see how you react. 

Regarding probiotics and fiber, both of these can be very helpful.  What you may want to remember is...don't do dairy free, gluten free, probiotics and fiber all at once, you won't know what's helping/hurting.  But, like I said, what helps one may not help you.

Meds...I'm on Asacol and Rowasa enemas, they have helped me tremendously.  The Asacol alone helped but didn't get me fully into remission...the addition of the enemas got me there.  But, these don't do the trick for everyone but do give them a chance to work before you move on to something stronger.

SCD/other diets...I don't know anything about these, I've not tried them, but others here have and you can find numerous threads for info if you'd like to.

I hope you can feel better soon!

Posted 8/5/2010 9:50 PM (GMT 0)
yes this stuff can piss a person off. You should be able to get it under some control before too long, look up diet modification and possible other treatments if Asacol doesn't work. Asacol end up causing problems for me and I switched to sulfasalazine.

On a side note, be careful that prozac isn't messing with your emotions.
Posted 8/5/2010 10:01 PM (GMT 0)
Sorry to hear about your diagnosis. We have all been there and know what it is like. You will definitely feel better emotionally once your symptoms start to subside. During my first flare which lasted 3 months before I was diagnosed (and I lost 40 pounds and a ton of blood), I can remember having my first formed poop after what seemed like endless diarrhea. I can remember pumping my fists and dancing around. It's kinda weird what this disease makes you do sometimes... :-)

VSL#3DS is another good probiotic and most prescription drug plans cover it.

Avoid high roughage food if it causes you pain (corn husks, raw veggies and so on).

As a real general guideline to start with, try to eat fresh whole foods and avoid junk food, sugar and other simple carbs. Avoid greasy, spicy foods too. Diets rich in beef and pork have been shown in some studies to be linked to more frequent flares.

I have gone years where I have eaten just about anything and everything with no ill effects, and other times where certain things really bother me. High fat (especially fried), and spicy foods are no-nos for me pretty well all the time, as is copious amounts of raw vegetables. To this day I don't eat steaks anymore. Every one is different.

Best of luck to you. Things will get better!!!
Posted 8/5/2010 11:09 PM (GMT 0)
Welcome to the forum!  We all understand how hard it is to deal with once diagnosed. I always look back and think of life before colitis.  I long for the days where I don't think about my poop all of the time..lol.   But I have learned so many things from this forum and one being to listen to your GI, BUT, also know that they don't know all and you may have to experiment with a few things on your own.

  For me, I take 2 Lialda/day but the biggest help for me was the Rowasa enemas. (although my inflammation is low only up to lower sigmoid) You may want to check these out.  It has helped many on here (of course though not all just like everything else with UC..it is so individual)  I also take probiotics..VSL#3 and metamucil fiber.  Another thing alot of us IBDers take is Vitamin D.  Seems like many of us are low on this vitamin, but be careful w/ it as too much can be toxic, but something to look into.  I have also experimented w/ SCD, gluten free, dairy but don't think it made too much of a difference for me. (although again, for some it makes a big difference)  I try to eat healthy ...why not..can't hurt.

So give some of these things a try....do it one at a time...go slow w/ probiotics and fiber and a food journal may be a good idea.  I also read a pretty good book when I first got diagnosed (Elizabeth Roberts...Living with IBD and IBS) I don't make any $ from  this lol....but I thought it was an interesting read and she had some tips that she uses to get through bad stomach days.  I was officially diagnosed in January too and am trying to make peace.  I find that when I feel like I have some control over my symptoms and learn how to use my meds to help, I feel a little better.  I also have a friend who has UC and she has gone 10 years without a flare and uses no maintenance meds (not that I recommend that, but she does it)  Soooo, I like to think about her and hope that we can go long times in remission.  Good luck and know that we are all here for you.

B

Posted 8/6/2010 12:00 AM (GMT 0)
I was also recently diagnosed and yes, it totally sucks.  I keep telling myself it could be worse.  I am experimenting with diet to see if anything works.  So far, I am trying Specific Carbohydrate Diet, probiotics, fish oil, Boswellia, Turmeric.  So far, I can't say I've seen any difference at all, but I am still trying.   This forum is great as a resource for vast amounts of information and experiences.  The things I have learned without a doubt are that everyone is different.  There are no right and wrong answers.  It all takes a lot of time and patience to figure this all out and see what works for you.

Hang in there, good luck, and welcome to the forum.

Posted 8/6/2010 12:06 AM (GMT 0)
Great advice listed above. I have found a good bulking fiber is wonderful. Haven't really had the big D after I committed to taking it. When I stop taking it I notice within 2 days.
Posted 8/6/2010 4:01 AM (GMT 0)
This forum is the only place I've found where people understand. Welcome to our crappy little club. I agree that you should try mesalamine enemas (Rowasa). They worked so much better for me than Canasa. A few time using them and you will be able to retain them. Diet modification has worked for me personally along with high doses of mesalamine.
Posted 8/6/2010 6:36 PM (GMT 0)
Wow.  Thank you.  I came on yesterday to vent, convinced I would be just a whining voice in the Internet wilderness, and you all have proven me wrong.  I can't express enough my gratitude for your support, suggestions and understanding.  Since my diagnosis, I've felt lonely and helpless.  But after reading your responses, I felt a weight lift from my shoulders (and my gut!).  I appreciate each of you taking the time to offer me advice, and hope to one day repay the favor.

I'm sipping on a water with Benefiber now, per the fiber suggestion.  Even if it doesn't improve my gut health, my mental health is in a much better state than it was yesterday.

_______________

Cail, 30, Female

UC Diagnosis - June 2010

UC Medication - Asacol HD 800mg tablets four times a day and 1000 mg Canasa suppositories.  Allergic to Apriso (insane hives)

Other Medication - Prozac, Adderall XR, Birth Control 

Occasional Medication - Ativan, Xanax

Posted 8/6/2010 6:52 PM (GMT 0)
Let us know how it works for you! When my son had a mini-flare this spring, one of the things his GI recommended was the fiber, and they told me they tend to recommend Metamucil or Benefiber. I gave him Metamucil, since we already had it here - and he was really impressed with the results (for a then 16 year old that's saying a lot, lol!)
Posted 8/6/2010 7:14 PM (GMT 0)
Hi Nola!

I highlly reccommend adding probiotics. They can't hurt! I find that a Danactive Smoothie a day really helps control my symptoms. Ditto PP on Vitamin D.

I also would consider swapping Lialda in for the Asacol - it's the same medicine, but you only take it 1 or 2 times a day instead of constantly. It makes me feel like less of an invalid/pill-popper. It is SUPER expensive without insurance though.

I have had good luck recently cutting down on sugar and white flour. Don't know why.

Caffeine for me is another no-no; switching to decaf at Starbucks has really helped.

GOOD LUCK and WELCOME!
Posted 8/6/2010 7:16 PM (GMT 0)
Oh, and I found out the hard way that birth control pills cause flares for me. Have you been on birth control for a while?
Posted 8/10/2010 1:15 AM (GMT 0)

@erinkate23:  I've been taking birth control since I was 21, so almost 10 years.

I'm 100% with the suggestion to ease up on caffeine.  I used to have a sugar-free Red Bull every morning for breakfast, but I stopped that when this flare started.  For the most part, I've been off of caffeine totally since late May...with the exception of green tea when I really need it.

Here's a question...If I'm seeing food in the toilet that hasn't really been digested, is that a sign that I should avoid those foods?

_______________
Cail, 30, Female
UC Diagnosis - June 2010
UC Medication - Asacol HD 800mg tablets four times a day and 1000 mg Canasa suppositories.  Allergic to Apriso (insane hives)
Other Medication - Prozac, Adderall XR, Birth Control
Occasional Medication - Ativan, Xanax

Posted 8/10/2010 12:39 PM (GMT 0)
Maybe you are not getting any effect from the Asacol, when I was diagnosed, I was given Asacol and I got worse, maybe you should mention to your doctor about that... also, you might want to cut out the milk for a while.
Posted 8/10/2010 4:20 PM (GMT 0)
The first time I ever scolded my own Mother was when I found out she was telling people, parents of friends of mine from High School. I was furious!! She never mentioned it to anyone ever again, I'm pretty sure. I think she has now practically forgotten that I have it. (you will hear often from me that I don't tell anyone other than very immediate family about my UC, that's my preference)

I also had to have a talk with my current husband when were dating seriously and he exhibited impatience with my needs. I told him that NO man was more important to me than peace to deal with this disease. He got it. And is now incredibly supportive and has endless patience.  


Even if the suppository only stay in for a little while, it will probably be doing some good. Even if you can't hold them for very long, you might try a liquid enema because at least it will get a coating in there.

I know it's disappointing not to be able to do things you liked to do. The one I miss most is boating and waterskiing. But I could also not hike, or stand in lines, or picnic...I had to accept this (as did my husband(s)) a long time ago, and we found other activities I could enjoy. I am an avid golfer, use a riding cart and just keep track of where the bathrooms are!

Posted 8/10/2010 4:31 PM (GMT 0)

NOLA Cail said...


Here's a question...If I'm seeing food in the toilet that hasn't really been digested, is that a sign that I should avoid those foods?


I wouldnt take that a sign of food to avoid. Food goes in and out of our system a lot faster than someone with a normal gastro system. If I started avoiding everything I saw in the bowl, Id be left with very little choices.

I find undigested asacol pills all the time too.
Posted 8/10/2010 7:28 PM (GMT 0)

Sweetie31105 said...
Maybe you are not getting any effect from the Asacol

I'm actually beginning to wonder if that's the case.  On one hand, I'm not using the restroom 20 times a day, the tenasmus is mostly gone, my stomach hurts less, and I'm not quite as lethargic...but on the other hand, I haven't had a solid BM in months and I have problems with urgency. 

Next week I have a follow-up appointment with my GI and an initial appointment with a specialist, and I'm compiling a list of questions and symptoms.  "What does remission feel like?" is at the top of the list, because if this is remission, I've got a looooonnng road ahead.

Posted 8/11/2010 7:28 PM (GMT 0)
So, you were diagnosed in June....you need to do more reading to understand what UC is about and how it pertains to you, in your life, etc. Therapy is a good thing to do, but it's not really the UC...it's one part of your life that is requiring huge change and outlook regarding your future. Experience, unfortunately, is the best teacher....

You aren't on enough rectal meds...please try Rowasa.

You're also on the highest dosage of Asacol....do you have pancolitis?

Don't get hung up on the food aspect....in a formed stool we don't see all the varying parts that make it up.

q
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