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Ulcerative Colitis
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Posted 11/1/2013 1:26 PM (GMT 0)
Hi Everyone,

I haven't been very active on this board, but visit it frequently to read posts about others experiences with this disease.  I highly respect everyone's opinions as you all are living with this crappy disease too.  Needing some feedback on my disease and any info is much appreciated!!!  Here is my story----

3 weeks after having my second baby in January 2013, I started experiencing urgency and a white mucus on my poo---was visiting the bathroom 2-3x's/day with normally formed stool.  I thought I had just eaten something that didn't agree with me, but had never had mucus before and thought it was really strange.  It kept happening day after day and I was googling and researching and thought I possibly had an internal hemorrhoid from the birth of my child.  In April, I started having blood in my stool and I was really worried at this point.  I was going 1-2 times a day well formed stool with blood and urgency.  I found a GI and scheduled an appointment.  He immediately wanted to perform a colonoscopy (had it in May).  He diagnosed me with ulcerative proctitis and prescribed Lialda (which did nothing).  I immediately went on a Paleo diet (even though he and the 2 other doctors I have seen since then said dietary changes will not effect my symptoms) and saw improvements in my symptoms and requested rectal mezalamine (based on info from this site) which pretty much eleviated all my symptoms.  Unfortunately, I stopped my Paleo diet and went back to my old eating habits this summer and have had 1-2 stools a day with bleeding and urgency while on the mezalamine enemas/suppositories daily.  After reporting this to my GI he put me on prednisone in the beginning of Sept.  I was on 40mg at first and I had horrible side effects (was at that dose for 4 days).  I told him that my proctitis symptoms were much more tolerable than the predinisone and that I wanted off.  So I have been weaning off since that point and was down to 5mg 2 weeks ago.  After being at 5 mg for a week, I noticed a marked increase in the bleeding.  1 week ago I decided that I had to get serious about figuring out what the trigger was to my disease so I cut out grains, rice, and potatoes.  I noticed a huge improvement in my symptoms and every day the bleeding got less and less.  Yesterday I stopped the 5mg of prednisone.  Today no blood and no urgency (was the best feeling ever---never thought I would say that about pooping:)!!!  So I guess at this point I am wondering, do I have ulcerative colitis?  Or do I have a sensitivity to one of the things that I cut out of my diet that was causing my symptoms? Or could it be a coincidence that I just happen to go into remission coinciding with the removal of that stuff from my diet????  I should clarify that I have NEVER had diarrhea since my symptoms started...I guess these are all questions that I should ask my dr, but wanted to get opinions from here and see what you guys thought...

Posted 11/1/2013 2:21 PM (GMT 0)
Who knows? Proctitis and UC can spontaneously go into remission. Did a change in diet help? I don't know, but time will tell. If you stick to the diet and remain symptom free you can conclude that diet affects you. But I wouldn't go so far to say that your diagnosis of proctitis is wrong; you're just in remission, which is fantastic!

Sue
Posted 11/1/2013 2:22 PM (GMT 0)
the diagnosis of UC/UP would have rested on cellular changes seen in biopsies taken during colonscopy, and after eliminating infectious colitis and/or food intolerance colitis. idiopathic UC is a dysregulated immune system response to gut microbes.

but this diagnosis is tricky because once gut microbes are disturbed, some foods become more difficult to digest and may cause symptoms similar to UC. also, some processed high-carb food can let some undesirable gut microbes bloom and provoke an immune response which becomes dysregulated in genetically susceptible individuals. or people with UC and dysregulated gut mirobes are opportunistic targets for infectious agents like c. diff and/or some yeast issues.

while there are some key common elements to the disease, things (and effective treatments) can get highly individualized.

it is hard to say whether your Paleo stints eliminated something you had a primary intolerance to, a secondary (following microbe dysregulation) intolerance to, or whether you simply eliminated enough bulk and obtained a sufficiently low residue diet that you got some bowel rest.

because of the known/proven genetic susceptibilities, and because the immune system begins to attack gut microbes it normally tolerates (i.e., they were always there) I think some doctors say food does not *cause* UC. In my opinion, if asked the more specific question of whether food can moderate unpleasant symptoms of UC, more doctors would say "yes". or maybe "yes, but we don't have good studies on which foods at which times in which patients."

there is also evidence that various nutritional components of food/supplements may help promote or maintain remission. For example, the fermentation in the gut of some grains can provide butyrate to the distal colon and promote tissue repair - but this is bulk and may initially increase bleeding. Or removing glutin when flares are very hot can help things cool down for some people and later it can be reintroduced without problem. Or studies that show some anti-inflammatory foods seem to maintain remission as well as melsalimines. There are many other examples - the most common element that few things work for all people at all stages of their disease.

But if Paleo gets you to a good place, why not continue it? Maybe introduce some anti-inflammatory supplement too. I eat oat bran, avoid milk sugars, take probiotics, avoid gassy foods, and use more rice/quinoa than wheat - in addition to my Lialda - and I have gotten pretty close to remission. I don;t think I am ever going to stop those things.
Posted 11/1/2013 2:28 PM (GMT 0)
I agree with the others. I eliminated gluten as the last and final step to achieving a good remission. I will not eat gluten anymore. But I will also continue to use my meds. They are safe and effective. I encourage you to stay on an oral mesalamine, a rectal mesalamine (you should be able to taper that to a weekly dose as your rectal symptoms subside) and stick to the diet that works.
Posted 11/1/2013 2:39 PM (GMT 0)
Some people with Ulcerative Colitis do not experience diarrhea. In fact, I know people that have it that have constipation instead. The colonoscopy is what you have to go by because that's what shows that you have UC.

As far as diet is concerned, I was on a low residue diet with my initial flare and went back to it during my latest flare. It basically just helps you to go to the bathroom less often when you are having diarrhea. I have never tried the Paleo diet or any other special diets, but I have discovered what my trigger foods are and try to avoid them. Too much raw veggies, such as salads, tends to give me symptoms. I can have it maybe three times a week, but certainly not everyday. I also try to stay away from deep fried foods because those have also given me symptoms.

I have found for me that Greek yogurt helps me. I noticed improvement when I started eating it everyday.

Just do what works for you. Everyone's body is different. If the Paleo diet helped, then go back to it. But so stay on the meds unless your doctor tells you to go off of them. Ulcerative Colitis tends to spread and can eventually be throughout your entire colon.
Posted 11/1/2013 2:58 PM (GMT 0)
Yes on the cellular level from my biopsy I had inflammation that warranted the diagnosis of Ulcerative Proctitis---so I guess it doesn't matter what was "causing" it---it was there so that is what really matters??? I guess my question is do I have a chronic lifelong disease if removing a certain food causes it to go away??? I know my "remission" has been really short lived at this point and hard to know if it is true "remission"...I just found it kind of crazy that a little over 1 week after eliminating 3 things from my diet, my symptoms have completely gone away. I am definitley going to stick with what I am doing for a few months and then consider slowly testing the foods I have eliminated again. I am not on an oral 5-ASA at this point. I have been doing a hydrocort enema nightly since my symptoms started to recede as I ran out of my Canasa...I take vitamin d, garden of life probiotic, and omega3 as well.
Posted 11/1/2013 3:19 PM (GMT 0)
I think we sometimes confuse cause and effect when it comes to diet and our disease. I am not sure anyone has the final answer here, but what DB was saying above is - your disease probably caused the intolerance, not the other way around.

People with IBD have an inappropriate inflammatory response to normal stimuli. Or maybe people with IBD are intolerant to common foods and develop an inflammatory response. Or maybe people with IBD have lost some crucial gut bacteria that helped moderate immune response, digest specific foods, or both. It is something that is unknown and our best advice to you is to stick to a diet that works for you and keep taking the meds. There are others here who have taken the diet only path. Some of them are successful, some are not.

So yes, you have a lifelong [as of now] totally uncurable inflammatory disease. It is sad. It takes a while to adjust your thinking to this. If you're like most of us, you will experiment over the next few years with different approaches to meds & diet and you will probably have more flares down the line. It's a common human failing and "denial ain't just a river in Egypt," as they say.

You are a new member in a club well populated here of women who developed IBD following pregnancy. I'm in that club, too. Pregnancy is a well known immune response deviator, and may also be responsible for a big shift in the gut microbiome. The cause of your disease and mine has not yet been found but I assure you, people are working on it.
Posted 11/1/2013 3:42 PM (GMT 0)
Thanks Kazbern --- the disease causing the intolerance, not the other way around---that is interesting and makes sense---but is it possible the post pregnancy state made me more suseptible/vulnerable to all of the harmful effects of the crud I was eating thus triggering the immune response??? I have been doing a TON of research via this forum and some on my own. Have you read much into the book "wheat belly" and/or the effects of wheat on health? Very very interesting stuff---I used to eat a TON of wheat products.--all in the name health only to now find out it is HORRIBLE for me. Also, in the midst of my research on this disease I came across a research article on celiac disease...which is an autoimmune disease...and the premise of the paper was that once you remove the gluten from the diet the disease ceases to manifest...therefore concluding that ALL autoimmune diseases could feasably be "cured" by removing the offending party from the body. What do you think about this hypothesis? That is what I am wondering though I may still have this disease if I remove whatever is causing my symptoms (who knows what this is not necessarily food) does the disease cease. I am still trying to come to grips with a chronic diagnosis...not cool at all. I do have asthma mainly triggered by seasonal allergies, so I know my body already engages in an inflammatory response to stimuli it shouldn't....I really appreciate your insight. While my husband is supportive and I am very open regarding my disease with him, it seems to be such a lonely disease that people often suffer in silence with since the symptoms are so unpleasant. I hate that the most about it. I don't ever want to be ashamed because "I poop blood":).

Post Edited (miapia23) : 11/1/2013 9:47:21 AM (GMT-6)

Posted 11/1/2013 3:52 PM (GMT 0)
It's very confusing! What makes it worse is that it is never static and always dynamic. What works today won't work tomorrow and I find that very upsetting.

But we can find relief for awhile and give things time to calm down which helps keep us sane!

Good luck!
Posted 11/1/2013 4:12 PM (GMT 0)
MiaPia, here's some data for you, from my own history.

I did not change my diet when I got diagnosed. I was eating well before IBD and after IBD, and by "well" I mean that I maintained a normal BMI by eating a diet rich in fruits and veggies, low on animal proteins and full of whole grains (not a lot of wheat but I did enjoy pasta and pizza). I loved a dessert now and then but did not eat lots of "junk." When I got sick I ate less, tried a low residue diet, etc. but none of it made a difference. After many years of undertreating my disease I finally got serious about it and got the right meds in place. I felt a lot better but was struggling with the final tweaks. I came to this forum in 2010 and worked with my GI on figuring out what was going on. At that point I had trouble maintaining a normal level of hemoglobin (a chronic problem for me), I had weird motility issues (constipation followed by diarrhea), upper right side pain, and some joint pain now and then. My GI did a lot of studies. I had my gallbladder scanned and the HIDA test done. I had an abdominal u/s. I had an abdominal CT. None of these showed any issues. That's when my GI suggested I adopt a gluten free diet.

People on this forum had suggested the same to me but I discarded that idea because my rheumatologist had tested me for gluten issues in 2007 and nothing turned up. But when my GI recommended it we were talking about moving away from the mesalamines and into more serious meds and he thought I should try this dietary change before making the leap into riskier meds. So I did.

And I got better.

A few months after the GF diet started I had my first clean scope in 10 years.

I do not know if there was inflammation present that was causing all of my complaints before going GF. The studies done during that time didn't show any. But I am thrilled to not have any inflammation now and to have no symptoms related to my bowel. I still struggle with motility a bit and have added psyllium to help with that. Psyllium is probably a good idea for everyone with UC as it appears to help the "good" bacteria as well as bulking the stool. When I make a mistake and eat gluten I feel awful, but over a few days or so those symptoms go away. I haven't seen blood in a long, long time.

I also have asthma like you and I think I'm just an inflammation prone person. I've had reactive arthritis from viral infections, too, which kind of goes along with my understanding of my body.

I hope that you feel better soon. Stay on your meds and advocate for yourself with your DR if you do not feel you are being heard. Your husband will come along. You do not have to handle this alone. You can talk about your poop as much as you like here on this forum.
Posted 11/1/2013 6:55 PM (GMT 0)
It's possible that post pregnancy hormone swings triggered your UP. I believe, until proven otherwise, that those of us with UP/UC are genetically coded for it. When the trigger, whether it be stress, antibiotic use, c-diff, food borne illness, etc. hits, we then head down the road of full blown disease that will give us life long periods of flares or remission.

Sue
Posted 11/1/2013 7:13 PM (GMT 0)
I seriously hate this disease.  HATE HATE HATE IT!!!!  Vent over:)

I want to know the "why" and there is no answer...So basically ulcers in the rectum cannot be a symptom of food sensitivities????????  Is this is a dumb question???  1 of the 3 doctors I went to basically told me at my first appointment I really don't think you have ulcerative colitis...but he couldn't tell me what the heck I had based on my symptoms.  Now that my symptoms are gone, I am just wondering if he was right.  O well, I know no one here can answer that.  Time will tell...I am praying that I won't have to deal with this disease as long as I avoid certain foods.  Hopefully I am one of the lucky ones and that is the answer.  I guess everything else REALLY doesn't matter as long as I don't have to deal with it anymore:)  Best of luck to everyone in their journey's to health and wellness. 

Post Edited (miapia23) : 11/1/2013 1:16:30 PM (GMT-6)

Posted 11/1/2013 7:22 PM (GMT 0)
It can take many many months to accurately confirm the presence of this disease. There is not one definitive test to rule it in or out so doctors have to approach this like a jigsaw puzzle. And yes, right now, there is no answer to 'why'. I was first diagnosed with proctitis in my mid twenties. I was successfully treated and then didn't have my next flare until I was 31. The second flare didn't respond to treatment and I was diagnosed with full blown UC at that time. I was put on medication and my symptoms abated and I had a 10 year remission while staying on sulfasalazine. But then that stopped working and I went into a 2.5 year flare that required me to take every UC drug out there, plus the diet and alternative treatments. None of this worked and I opted for surgery.

I point this out to you because one never knows the course of their disease. No two of us are alike and when the secret of UC is unlocked I believe researchers will find several subsets of the disease, meaning there is just not one type.

Sue
Posted 11/1/2013 7:37 PM (GMT 0)
So basically ulcerations does not = a chronic diagnosis. And from what I have read other things can cause proctitis (example c diff). So though I tested negative for c diff, there could be something unique to me that was causing the ulcers that once the certain trigger from what I am eating is removed the ulcers are allowed to heal. Anywho, just me talking out loud. Again, time will tell if this is really "remission" or just the disease taking a breath before it decides to attack me again. All I know is I am going to do everything I can in my power to stop it in it's tracks!!!!
Posted 11/1/2013 9:51 PM (GMT 0)
you are voicing a kind of bargaining with life. you want to not really have UP, and all along it was food sensitivity launched by pregnancy. maybe.

you don't see any value in an oral melsalamine - but hindsight might be different if a flare returns/spreads and does not respond to treatment. I would at least introduce some anti-inflammatory food and supplement. Whether spinach, or slippery elm, or both, or something else.

while it is possible you can avoid a few foods and go med/supplement free for life, you are gambling. there is some evidence your genetic makeup is susceptible to immune response dysregulation. the chances of you having another flare are much higher than the average persons' chances. - especially if you have another child.

bottom line, I would have some maintenance program. it seems a saver bet than the bargaining you are doing. if it turns out you really did not need the maintenance, no big deal. if it turns out you did, and you get really sick or lose your colon, that is a big deal. how much do you want to gamble?

Post Edited (DBwithUC) : 11/1/2013 9:31:57 PM (GMT-6)

Posted 11/2/2013 3:01 AM (GMT 0)
Just to clarify I am not against oral meds at all. I personally didn't see any benefit from them and my doctor discontinued in favor of rectal meds which seemed to work for awhile and then stopped...I am not saying that I am goin to stop all meds. I am going to keep using them for awhile continue the dietary changes ( I do eat an anti inflammatory diet already mostly fruit veggies and meat) and reasses when I see my doctor again. Yes I guess I am bargaining (hoping and praying) this is all a big mistake. I don't want this disease so sue me...I was just wondering if anyone else has had a similar experience to me and no plans for another child:).
Posted 11/2/2013 3:46 AM (GMT 0)
well interesting, you are moving from the bargaining stage to the anger stage. seriously, "sue me"? - don't ask for information if you just want to be told one thing. just say what you want to be told.

I did not say maintenance plan has to be oral 5-asa. They do have trouble reaching the far end of colon. Might not be best choice. But they might keep UP from becoming UC. You and doc can decide.

not sure what you are talking about fruits and meat - to my knowledge neither category is specifically an anti-inflammatory, although some veggies are. I have read studies where some anti-inflammatory supplement like curcumin worked as well as 5-asa for maintenance - but it was just one study. There are also other herbs and supplements that are strong anti-inflammatory, like aloe vera juice.

never said you can't hope your initial diagnosis was wrong. I did make a point about the wisdom of some sort of hedging you bet with some sort of ongoing prophylactic measure. Supplements, oral meds, probiotics, whatever ... something more than "fruits and meat", which makes very little sense.

I'm moving on.
Posted 11/2/2013 2:07 PM (GMT 0)
Just wanted to add that the hydrocort enema is not a long term tool. You should get a mesalamine enema for better, safer treatment over the long term. Forget about the Canasa, it's not going to treat anything beyond the rectum.
Posted 11/2/2013 2:12 PM (GMT 0)
When I first came to the threads I was so sure that my situation could be cleared up with diet and clean living. I was given enemas and nothing had ever made me feel so old and unattractive.

I really had a hard time getting my head around the "meds for life" news that I was reading here.

Nobody wants to tell anyone that news out of malice here! People here are trying to be supportive and just honest as we sometimes don't get the whole truth or info from our doctors.

It's no fun to be in this club but you will not find a better support or more knowledgable people anywhere.

Go and find out if you really have UC via a scope and if you don't, I an really glad for you! If you are unlucky, then come back and we will be here for you.

Have an open mind and be ready to be blown away by what you will learn here!

All the best,
Xoxoxo
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