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first flare up ever and looking for more alternative approaches

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Posted 8/25/2011 3:11 AM (GMT 0)
Hi all! Last night was the first time I stumbled across this forum and I COULDN'T BE HAPPIER! I'm so excited to get some input from someone other than my doctor, because I feel like all of you have so much more experience living this day in and day out.

First of all, a little about me. I was diagnosed with UC in a little over a year ago (June 2010) and currently I'm experiencing my first flareup.  For the first year I took 2 pills of Lialda 1.2 GM/day and I was peachy perfect fine.  I finished my senior year of college where I also was a college athlete and I never ran into any trouble... and then this past May after graduation, BAM it hit me. I had nightmare about what a flareup would be and boy was I right.  Currently I'm tapering off prednisone (35 mg/day) and taking four 1.2 GM Lialda/day, however I've been on the prednisone since late May/early June and I tapered off around 20 mgs or so and my flareup was back, going to the bathroom constantly, and full blown blood again.  I'm currently waiting to hear back from bloodwork in order to start a combo of Imuran as well as finish tapering off the predniosone until the Imuran kicks in (he said about 2-4 months). Currently on the prednisone I only have urges to go in the morning, but it can be up to 6 or so times before I'm completely done and it is still bloody.  I have also never been this exhausted in my life, I've been a dedicated athlete and I have stopped going to the gym because I have no life left in me except to do walks at night with my mother (I played basketball in college).  Needless to say the weight has been piling on and on (working on 15 lbs), which is absolutely crazy to me.  So I guess here are a few of my questions...

What should I expect from the Imuran? I'm so beat and worn as it is and I know it's going to be slowing my immune system even more.  Is this going to slow me up energy wise as well?  What have you experienced from it? (Dr also said I would continue on 4 pills of Lialda/day because it promotes healthy colon cell growth)

The whole diet thing... My doctor swears it isn't diet, but let me tell you what... I grew up on chicken fingers and that was the first thing to go for me.  Would you reccomend keeping a food log?  Anything in particular?  And as far as alcohol goes I've obviously had my fair share after some big wins and it never bothered me but seriously the month I got my flareup a warning label popped up on my lialda that was NEVER there before that said avoid taking with alcohol... and i've avoided it this summer with the predniosone, minus a beer or two here and there and a trashed wedding night, and I was fine.  Should I avoid that all together?


I saw that alot of you are taking vitamin supplements and probiotics.  Again, anything in particular?  Feel free to spell everything out, I'm a science nerd, I graduated with a degree in biology (anybody hiring? haha), but i love all the dorky stuff behind it.

My biggest concern as of now is how I have absolutely no energy. Dr said its due to the prednisone but honestly I'm glad i'm inbetween jobs because I don't know if i'd have the energy to deal with 8 hrs/day in a lab.  Is this really the steroids or is it the overactiveness of my colon?

I have so many more questions of course that I can't think of but right now I'm really most curious about past experiences with Imuran/vitamins/supplements.

I really just feel like I'm undereducated about the topic.  I really want to know what has worked for people and how their experiences went with certain medications/combos.   I'm looking to change doctors as of now, currently two of the GI's left the practice and my doctor is just booked silly, it's ridiculous.

Thank you all :)

Posted 8/25/2011 4:44 AM (GMT 0)
Hi congrats on graduating!

Alcohol never caused interference between me and my lialda, however alcohol will most likely affect your colitis symptoms especially while flaring. when I am in remission I tend to drink straight vodka with a cranberry juice, no beer or wines, but you will learn that everyone is different.

Everyone on here takes different things and everyone has a good wealth of knowledge about the condition. But I take the Centrum Men's multi vita every day, it has Vitamin D which is very good for colon health. Also Fish oil pills are anti-inflammatory and can help. I do not take probiotics, but a lot of people do and claim they help.

Have you tried rectal night meds? When I flare I use the hydrocort enemas for about a month and it usually clears things up.

As far as diet, when flaring I stick to the low-reside(fiber) diet until things clear up. If they do not in a couple of weeks, I do a 48 hour liquid diet, it is draining but in combination with 4 Lialda's a day and hydrocorts at night, it clears things up. However everyones colitis is varied from person to person.

When you are not flaring, you should be able to eat whatever you want but be mindful! You will find "trigger" foods that activate your symptoms, when you find these triggers, you need to avoid them. Many people have problems with dairy, gluten, fatty, sugary, greasy... I know I can't do anything creamy/milky/greasy, but anything in moderation is usually O.K.

Be well!
Posted 8/25/2011 10:16 AM (GMT 0)
I would try the following:

food journal (pay particular attention to lactose, fructose, gluten, wheat, yeast, artificial sweeteners, pro-inflammatory foods)
probiotics
vitamins
meditation and relaxation exercises
natural anti-inflammatories (turmeric, ginger, spinach, salmon)
and fecal transplantation if there is a possibility that the UC is bacterial related
and rectal meds if flaring

BTW, although I can eat more things when I'm not flaring, I can not eat whatever I want.

Post Edited (subdued) : 8/25/2011 4:19:20 AM (GMT-6)

Posted 8/25/2011 11:55 AM (GMT 0)
blonde0724,

Welcome to the forum.

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.

I'm glad you're thinking about alternatives, that's great.

Here's what's worked for me:

1) Adding L-Glutamine 15 grams - for colonic repair.

2) 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 (mesalamines).

3) 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).

4) Drink lot of good water.

5) Get your vit. d and b12 blood work done, to see if you are deficient.

6) 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.

7) start a food journal and see what correlations come forth

8) 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!

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

10) 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.

11) 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).

What do you think? TMI, lol?

My GI also told me that diet has no impact, but the truth is for many of us, it's had a huge impact.

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, :()

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

If you need any links to the above information, let me now.

Posted 8/25/2011 2:44 PM (GMT 0)
Nope, keep the info coming!

I don't even know what rectal meds are/what they help with so I'm clueless in that department.  I don't understand... if you're having a flare and you can do these things, why make me suffer and go on prednisone? 
So it looks like at the minimum I should be at least taking some sort of multi vitamin concentrating on vitamin D. The daily anti inflammatory supplements such as fish oil, would you take them daily even when you're not flaring? I guess it wouldn't hurt.

As far as the probiotics, can you get the OTC or does that all come from the dr? I'm assuming they're going to be semi expensive so maybe it would just be better to go through with prescriptions and stuff.  I guess basically with all of this extra vitamins/minerals supplements its just seeing what works for everybody. I just need the suggestions so I can go and find some myself!

One of my teammates actually can't eat gluten so my trainer put me on her diet for about two weeks, however I wasn't flaring and nothing really changed, but for that year I felt as if I was invicible on those meds.  I guess I would only know if that worked when I was flaring, right?  The only thing I've tried pulling out of my diet is the dairy during flaring I didn't see anything there.


Any ideas with the tiredness? I still don't understand why it's been lasting this long.  I am normally a very fit and active person but not this summer. 

And any input on the Imuran?  I'm actually quite scared to start taking it because I do get sick very easily.  I've had quite the medical history before this in the past four years including pancreatitis and I know that the Imuran can bring on an onset of that. 

 

Posted 8/25/2011 3:05 PM (GMT 0)
For some reason, a lot of docs don't think their patients will use rectal meds, so they don't mention them. And some don't think that they'll make much difference for people who have pancolitis (like me), which is just asanine. The oral mesalamine (the active ingredient in Lialda) doesn't really do a good job at treating the distal portion of the colon and rectum, and the rectal meds do a fantastic job.

Personally, if I were in your shoes, I'd tell your doc you don't want to go on the Imuran yet, but want to give a max dose of Lialda (so 4/day) PLUS nightly mesalamine enemas, along with a high-quality probiotic a try first (and probably some pred). I honestly think that you have a shot at achieving remission that way.

Then, if you get in remission, you can start tapering the rectal meds SLOWLY, but only after you've been in remission for a while. Then you can maybe taper the oral meds a bit, too.

I'm on 4 Apriso and a probiotic daily, plus a mesalamine enema twice a week, and have been in a really solid remission for over two years.
Posted 8/25/2011 3:12 PM (GMT 0)
You may believe your childhood diet is to blame, but I will counter that with my childhood diet which consisted of organic fruits and vegetables, whole grains, and minimal processed foods or fast food. I got UC despite a clean diet. While I will agree that some foods can aggravate UC symptoms, I do not believe that they cause UC.

You should not be treating UC with prednisone. Prednisone is a very destructive drug and research shows that if you cannot get off of it successfully within 4 months that you are considered prednisone dependent. At that point you need to have a serious talk with your GI about other medical options.

You may find luck in some alternative treatments (I tried them all to no avail) but remember that it's key that you reduce inflammation. Long term inflammation leads to cellular changes which leads to dysplasia and colon cancer. I'm not trying to scare you but when you have to manage this disease over the course of a lifetime it's important to reduce the inflammation as soon as possible.

UC is unpredictable and is chronic. I had 10 years of remission followed by a 2 year flare that resulted in surgery. I think many of us feel we have more control over this disease, or should, but it can have a mind of its own even when you are doing all the right things.

The fatigue for me was a killer. Be sure your GI is monitoring your B-12 and Vitamin D levels. Also have him/her check for chronic illness anemia. All of those things will cause fatigue, and plain ol UC will cause fatigue. Find out if your fatigue has reasons other than the illness.

There's a wealth of information on this site and many here have had success with alternative treatments and will offer you lots of good advice.

Sue
Posted 8/25/2011 3:38 PM (GMT 0)
blonde0724,

Rectal meds are easy and they don't have the potential side effects (kidney & liver problems) that the oral 5asa's have. In your case, perhaps you should try canasa suppositories first.

I would recommend you stay away from prednisone, and actually IMO all other meds, including Imuran if you can, - because they are all immune suppressants. IMO,  try some alternative approaches first, as the ones I suggested.

Take a look at LDN - it's been successful with almost no side effects.

You shouldn't be supplementing with Vit. D, unless you've been blood tested and have shown a deficiency, as with it there are toxicity issues.

Cost wise, and effective-wise, the prescription VSL#3 DS is a better value as well.

With regard to tiredness, alot of it has to do with this disease and how it affects your nutritional absorption.

So, you could be eating well, but if  you're not absorbing your nutrients, then you won't be getting what your body needs, no?

 

Posted 8/25/2011 3:43 PM (GMT 0)
So are the mesalamine enemas the rectal meds? They're just a dosage of the mesalamine but in the opposite direction that can treat them?  I really believe the whole graduation/finding a job is what killed my remission. I've been saying all along that the stress is what killed me to start with.  This coming month I'll be on prednisone for four months.. and the game plan as of now is to stay on them until the Imuran kicks in which could be anywhere from two more months to four.  I really don't want to stay on the pred that long, especially at the rate I'm tapering now (5mg/2 weeks).  Have you been on the Imuran before?  Is this a more serious medicine than the Lialda? 
Posted 8/25/2011 6:02 PM (GMT 0)
I'm really concerned that your doctor may not be educating you properly and laying out all of the choices and consequences of different treatment plans. Rectal meds - ASA and cortisone enemas - should have been one of the first medical options offered to you as they're effective and have minimal side effects. I'm also amazed your doctor has you on Imuran, yet he/she hasn't educated you about the different levels of UC meds and their side effects/risks. You may want to consider seeking a second opinion.

Basically, you have mesalamine/ASA meds, steroids (predinsone, etc.), immunosuppressant drugs (6mp, Imuran) and biologics (Remicade) with ASAs being the safest and ramping up from there. Here's a summary that might help:

* Aminosalicylates. The best treatments of ulcerative colitis are preparations of aspirin-like medications called aminosalicylates or 5-ASAs. They are used in all phases of the disease, including maintenance during remission. They may be administered rectally in patients who have mild-to-moderate disease that occurs only in the lower intestine. They may also be taken by mouth.

* Corticosteroids. Corticosteroids (steroids) may be added or used alone to reduce acute inflammation. (They are not recommended for maintenance therapy). Steroids may be administered rectally as an alternative to an aminosalicylate if the disease is limited to the lowest parts of the intestine. Oral forms may treat moderate to severe cases. People who do not respond to less aggressive treatments may need intravenous steroids.

* Immunosuppressants. Drugs that suppress the immune system (immunosuppressants) are useful, either alone or in combinations, for disease that does not respond to other treatments or for maintenance of remissions.

* Biologic Response Modifiers. Unlike drugs that are made from chemicals, biologic response modifiers, (also called biologics), are produced from living organisms. Biologics are designed to stimulate the immune system and interfere with specific proteins (cytokines) involved with the inflammatory response. Infliximab (Remicade) is the first biologic drug approved for ulcerative colitis. It blocks a cytokine called tumor necrosis factor (TNF).

Regarding your fatigue, you should have your blood iron levels checked, if you haven't already. If you're continuing to lose alot of blood in bowel movements, you could be anemic. Also have your B-12 levels checked. In general, fatigue is a very common symptom of flaring. When you're flaring, you're not able to digest and absorb nutrients as well as when you're not flaring. You could be losing alot of fluids, too. Consider a protein or meal replacement shake to help you get the nutrients you need in an easier to digest form.

Post Edited (princesa) : 8/25/2011 12:08:28 PM (GMT-6)

Posted 8/25/2011 6:24 PM (GMT 0)

I agree with princesa, it's astounding to me that your doctor hasn't bothered to educate you as to meds,their side effects, and your options, such as rectal meds.

It may be time to find a new GI, no?

One you can speak with and who will listen to your concerns.

Posted 8/25/2011 7:01 PM (GMT 0)

hello, Welcome to the forum. Having been through this myself for the last 20+ years I can offer this from my own experiences:

-its never about the food or what you eat/drink , ate/drank- however in the middle of a flare up, it is recommended that you eat soft-cooked foods, broths, (if you eat meat-then consume lamb/goat/beef bones broth- the collagen and other joint extracts does help with the inflammation in the colon), stay away from any raw, hard to digest foods, bran, etc.

-prednisone almost never works as a long-term treatment plan and if you have been on it more than 3 times-time to check soemthing else out.

-Imuran poisoned me and I went into adrenal fatigue (the drug or the disease conundrum).

-Lialda is not working either- why the drug combo then?

--find a doctor who is also open toalternative approaches.

-Turmeric, slippery elm, and other healing herbs also help.

- be open to the idea that this is also a mind-body imbalance and not just your colon/large intesting/bowel disease. Therefore I would take a hard heart-felt look at yourself, your mental attitudes, behavior, responses in life, anxiety, stress, fear levels etc. and start to also approach yourself holistically. What works for others may not work for you given that you are a unique person with your own set of life circumstances, lifestyles, behavior and if I may dare to add -warning waxing philosophically from an eastern perspective your unique karmic make-up etc.

- alternative therapies that actually worked for me- Chinese meridian acupuncture therapy along with Qi Gong treatments, Chinese formulated herbs, japanese meridian acupuncture therapy, BodyTalk, myo-fascial release, meditation, meditation, meditation. Ayurvedic oil massage (abhyangam) therapeutic treatments (30-days straight except for when you are on your cycle) , ayurvedic combination of diets based on your constitution and follow up herbs, pastes, potions etc.

If you are open to the idea that when your body goes out of balance then its time to take notice of your whole lifestyle, thought processes, approach and reactions in life etc. is a healthy approach. Acknowledgeing ourselves, our limitations and starting with immense compassion (notice I didn't say sympathy) to ourselves and others is a great start. The Colon is typically associated with the consciousness of letting go in life, having no control, or too much control. Start examining this for yourself and see what resonates for you. Peace and good Health

Posted 8/25/2011 7:25 PM (GMT 0)
OK. I've been on prednisone, azathioprine, humira, lialda, cort enemas (dozens), mesalamine enemas (100s), probiotics etc. I've been on several at the same time. I'm in my mid 60s. Finally had a sigmoidectomy.

With that said, I think you can see from the other posts that one size does not fit all. The fact that your gastro doc is overworked is not helpful. Their idea of treatment is work their way up or down the pharmaceutical pyramid with their script pad. I don't think most of them have a clue what this disease is like on a personal basis, not that they should any more than a male OB doctor should be expected to know what childbirth is really like. I'm male btw.

The thing is, there is no quick fix to UC other than major surgery and then they tell you that taking out the entire colon is the only "cure". I've said in other posts that I would opt for surgery sooner rather than later. My gastro doc and I discussed that when I was first diagnosed. He told me some people are sick enough with their first bout that they go with the surgery and call it a day. Insurance companies may have a problem though justifying surgery. Of course they don't know what UC is like either.

Lastly, while I found that a specific diet did not fix me, a "low residue" diet seemed to help in resting my bowel. Low residue will not give you the volume that can irritate things. The other part is learning to destress which is the hardest thing to do for me as a Type A person.

You are going to have to take it slow and find out what works, or doesn't for you. But you must have a doctor on board you can trust. That can be the hardest part.
Posted 8/25/2011 7:36 PM (GMT 0)
Hello and Welcome!
First of all, I agree with the other posts about your GI doctor... I am very much a believer in holistic approaches.. I am on Lialda 4/day... and it wasn't getting me over the hump so to speak. I added in Aloe vera stomach formula and it made alot of difference. I recently added in L-glutamine powder after reading others talk about it on here and it really stepped it up for me. I still know I have UC but it no longer controls me. I am currently not flaring and have very few rough days. I do think that diet is also a factor here, I cut out dairy and all fast food and alot of caffeine(again advice from fellow UCers). I do take B complex supplements that does seem to help some with the fatigue. I also get sun on the weekends which makes me feel good and rejuvenated (even though it is really hot right now)... vitamin D thru the skin I suppose...
I also tried reflexology recently and think that is helping with my body's balance.
I read this forum everyday and get new information on different things to try.. alot of people on here have been trial and erroring this for a long time and offer great advice!!
Good Luck to you and keep us posted..
Posted 8/25/2011 7:45 PM (GMT 0)
i really haven't had any problems with my GI until now that i've looked up the imuran and i haven't gotten the information that i wanted from my own research.  i'm actually a little upset after reading all of your helpful posts that the rectal mediciations never came up.  the bloodwork should be in for me today or tomorrow so when he calls with my results to finally start the imuran i am definately going to bring up the rectal meds. i feel like this is such a jump in an extremity of a medication. and what happens when that works, then i'm on to the next medication down the line until i run out and finally do need surgery.  any other suggestions as to what i should ask about? i'm definately going to see if he can wean me off the prednisone a little faster, at least down to half the dosage or so, it doesn't seem to be helping necessarily.  and my life as a whole, i could probably be eating better colon friendly food, but the prednisone makes me so hungry i don't think i handle that right now.  there are obviously some stressors in my life that i can't get rid of such as trying to find a job, but that stress isn't as bad as it was a few months ago right out of college (i took my old summer job as a pool manager so i had some sort of an income).  i do firmly believe that the stress is my major cause of uc, at least for the flareups and initally when it came about. i do need to find some sort of stress reliever. usually it has been excercise and playing basketball but i don't have the energy for that now. meditation and yoga seems like such a yawn to me coming from what i'm used to hey it looks like i have to give something else a shot.

so the imuran is pretty risky to get on? did anyone actually achieve remission on it or itsn't it worth the jumping in severity of the meds?

thank you all soooo much for giving me more feedback. im really looking forward to discussing all of the things we talked about with my doc.  i just showed my mom this forum and she's about to read through everything as well - i'll let you know what she thinks!

Posted 8/25/2011 7:58 PM (GMT 0)
You won't know how well you tolerate the Imuran until you try it. My 28 year old son vomited for half a day after taking 25mg of Imuran. My doctor got me up to 50 mg gradually until I hit the right white cell count with him. I had bloodwork every 45 days. So, some tolerate it very well; others not.

I made it a point to avoid sick folks while on the Imuran since it decreases your immune response. You are specifically warned not to be exposed to live viruses including children who have been recently vaccinated with live virus immunizations e.g. chickpox.

I told my church family that I would no longer be shaking hands with them, hugging etc. Interestingly, they took it to heart and helped me out. Many would not come to church (small church) if they had a cold or flu symptoms for fear of infecting me.

Imuran is a tried and proven therapeutic drug for UC. It might well throw you into serious remission. Just make sure your doc is on board with the bloodwork.
Posted 8/25/2011 9:03 PM (GMT 0)
blonde0724, one thing that might be helpful in the conversation here and with your dr is to understand where your inflammation is. For me, I had ulcerative proctitis and inflammation in the cecum on my first scope. I needed both an oral mesalamine, and a rectal, and that's what worked for me. I did end up switching my mesalamine from Asacol to Pentasa and improved a lot - if Lialda isn't working for you, there are several other versions of similar meds that might work better. My first prescription for Asacol was for 2g/day, and I moved that up to 4g/day after a year of not much improvement.

It is important that you find an approach that allows you to get off the prednisone. The weight gain you're experiencing is probably due to the steroid. I'm not sure about the exhaustion (I always get super energetic on steroids) and agree that having your iron checked is a good idea. They should also check B-12 and vitamin D.

Some GIs like to start with an aggressive therapy to get you into remission fast, and some want to start with the conservative meds first and then move up the ladder. It sounds like you would appreciate the latter approach more than the first. From what you've written about your GI, it seems like the current approach is neither kind and not working. So yes, go back and insist on better communication and a more appropriate plan, and/or get a 2nd opinion. It took me 3 tries to find a GI I could trust and work with. I live in a big city with a world-class medical center, but it still is not easy to "get good help." LOL.

Stress is absolutely the one thing that is guaranteed to cause a flare. Its going to sound silly, but if you can manage your stress levels in your life you will have a much better time managing this disease. Whether you do that by thinking differently about your career plans, your lifestyle, the skills you have in relaxing, or the exercise program you adopt, this is something that will be very helpful to you in the long haul.
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