Advice? Nothing has helped my LC or IC

Rachaelknatcal · Post by **Rachaelknatcal** » Fri Aug 19, 2016 3:35 pm

Hi, I am new here, and seem to be one of the rare ones when it comes to symptoms and issues! I have read quite a few discussions on the site but haven't found much help where others have.
Brief history...I have had stomach pain my entire life, it was at its worst when I was 12, I had to be taken out of public school because the pain was so bad I couldn't get out of bed/leave the bathroom. I am now 20, and after years of doctors telling me I had ibs and visceral hypersensitivity, I was just recently diagnosed with LC. What's strange is my symptoms are different than most here. I am almost always constipated, and once in a while I get "episodes" where I get stuck in the bathroom usually for an hour or two, with a lot of diarrhea, (my colon empties out everything, so with days worth of constipation a lot comes out) and the pain is the worst pain I have felt in my life. I get sweaty, have actually ran a fever from it, get dizzy and have actually passed out and fallen off the toilet from it. The pain is unbearable. For the past several years, I have been doing a lot better, only getting those episodes once every month or two, but as of recent, they are acting up again, hence why I had the colonoscopy. I don't know if this is related but I also have recurring UTI's, IC and tachycardia.
My gi had me on budesonide...and it made me worse. It actually relieved my constipation some, but the pain was horrible. I was on it for 5 weeks and no improvement. Then my gi had me on balsalazide...I took it once and within 30 mins I had a stomach attack episode. The same thing happens when I take miralax, fiber supplements, florastor etc. I tried gluten and dairy free for a month, no improvement and I noticed my stomach felt more dull pain almost constantly.
I do take antibiotics frequently, but only nitrofurantoin for Uti and I usually don't see too many stomach symptoms while on it. My biggest problem is the pain, and the pain is crippling before any BM, which is maybe once a day, and after any meal. I'm not sure what to do at this point, I feel pretty hopeless. I have tried so many things, probiotics daily, magnesium, metamucil, different diets eliminating certain foods, exercise, peppermint tea, anti inflammatories, muscle relaxers etc and nothing seems to help. I keep a strict diary on meals, medications, symptoms and BM's and I can not find a pattern with the stomach attack episodes. Any info or advice would be appreciated.

Gabes-Apg · Post by **Gabes-Apg** » Fri Aug 19, 2016 3:51 pm

hi there
welcome to the group and sorry you have had a tough time of life with LC/IC

I have tried so many things, probiotics daily, what we have found is that probiotics dont work so well when we are having MC inflammation (it may work for other IBDS but not so well for MC)

magnesium, what type of magnesium, and how much elemental magnesium per day??

metamucil, we have found that for LC fibre tends to be an irritant

different diets eliminating certain foods, what type of eating plan/ what ingredients did you eliminate? how long did you stay on those eating plans

exercise, peppermint tea, anti inflammatories, muscle relaxers etc and nothing seems to help. were these natural antinflammatories or medication based NSAID antiinflammatories?

Its tough when then things that should help dont seem to. based on what you have shared, some of what you were trying could have been making things a bit worse.

Spend some time reading the posts and discussions (success stories area, posts by other new people)
we also have a guidelines for recovery that may be of assistance.
http://www.perskyfarms.com/phpBB2/index.php

hope this helps,

Post by **tex** » Fri Aug 19, 2016 5:08 pm

Hi Rachel,

Welcome to our Internet family. Not everyone here has diarrhea as the predominant symptom. My symptoms were just like yours — alternating diarrhea (D) and constipation (c). And yes, at certain times in the cycle the pain could be extremely severe. And in addition to occasional fever during severe reactions, I often had nausea and migraines, and severe arthritis-like pains. Like you, on those occasions I was unable to work.

And yes, when the predominant symptom is C, one should never, ever use budesonide or any other corticosteroid, because it will amplify the C.

IBDs cause magnesium deficiency, and as Gabes suggested, magnesium deficiency can cause recurring UTIs, tachycardia, night sweats, breathing issues (unable to take a deep breath), anxiety, depression, low energy, erratic (low or high) blood pressure, cramps and pain in smooth muscle tissue (intestines contain smooth muscle tissue). And budesonide further depletes magnesium.

The diet has to be done right in order to work. If any part of it is done wrong, it won't work. If you're been suffering with those symptoms for almost all of your life, a month on the diet is not nearly enough to allow you to see any results. If you can afford it, the best thing you could do at this point would be to order stool tests from EneroLab in order to determine exactly what your food sensitivities are. You can do an elimination diet instead, but it is much more difficult, and if you make any mistakes with your diet, you might not be able to get to remission.

Whatever you decide to do, we will try to help you in any way we can. This is a tough disease. Back when I was reacting I wasn't aware of the EnteroLab tests and it took me a year and a half of diet experiments before I figured out all of my food sensitivities. But I cut gluten out of my diet at the beginning and I never touched it again. It takes a long time for damage caused by gluten to heal. After I figured out the rest of my sensitivities and took all of them out of my diet, within about 2 weeks I was in remission. That was over 14 years ago.

Again, welcome aboard and please feel free to ask anything.

Tex

Rachaelknatcal · Post by **Rachaelknatcal** » Mon Aug 22, 2016 12:35 pm

Thank you for the great info! I am trying to read as much as I can on this site but there's just so much! I can post a longer reply to your comments later today but I wanted to ask quickly before I go out, what brands of magnesium are the best options for us? I have read as much as I can find about the different types, and I am going to try magnesium chelate glycinate first, and see what results I get. I saw a few different brands last night at CVS but I noticed they all had different ingredients like sorbitol, artificial colors, corn fiber etc, so I was wondering what brands we have found that are safe/what ingredients to avoid? I know I don't want artificial colors or sorbitol and I'm having trouble finding a good brand. Thanks for the help!

Post by **tex** » Mon Aug 22, 2016 2:32 pm

Most of us use Doctor's Best brand Chelated Magnesium. It's one of the most easily absorbed forms of magnesium, and the ingredients are safe for most of us. A few here use ReMag, which is very well absorbed, but it's a bit trickier to work with.

Tex

Rachaelknatcal · Post by **Rachaelknatcal** » Tue Aug 23, 2016 6:07 pm

what we have found is that probiotics dont work so well when we are having MC inflammation (it may work for other IBDS but not so well for MC)
That's what I thought. I have taken them when I have long periods of feeling well, and seem to have no effect. The problem is, I don't really know when I'm having a "flare" because when I get hit with it, it only lasts a few hours and I'm usually ok for at least a few weeks after that, having only mild pain every day. I can't tell what would be considered a flare for me because I've only ever had one period in my life where it seemed to never end for about 2 weeks.

magnesium, what type of magnesium, and how much elemental magnesium per day??
That I'm not sure. It was years ago when I tried to take it, my mom bought it for me. All I can remember is I took it for about 3 days, and then had a really painful stomach attack with diarhhea.

metamucil, we have found that for LC fibre tends to be an irritant
That makes sense. My gi suggested this to me and it had no effect, if anything it made things worse. Do we know what is safe that can help relieve constipation? That's my biggest problem on a day to day basis.

different diets eliminating certain foods, what type of eating plan/ what ingredients did you eliminate? how long did you stay on those eating plans
This one is difficult to explain. I am 20 now, and started trying to change my diet when I was 12 (when I was hit the worst). At that point I was told I had ibs, so I went by Heathers Tummy Troubles website, which now I see probably made me worse. I cut out a lot of stuff, like greasy, processed and fat foods. I was eating some cereals with soy milk, grilled or baked chicken, potatos, and other bland foods. I was tested for celiac and came back negative, and at the time with the info I was given, I assumed things like pancakes, bread, some fruits, oatmeal etc was safe, but if I am gluten intolerant/sensitive...that wouldn't be the case and I know that now.
For years I was doing ok because I just didn't eat a lot in general, only the same foods that seemed to be ok for me. None of it made sense, but I was better than before and I didn't know what else to do, my mom didn't either. Last year, I decided to start testing some new foods to see if it upset my stomach, and I had a period of about 14-16 months where nothing really seemed to bother me, I didn't really have any restrictions. Then in May, the stomach attack episodes came back gradually...happening every few weeks. I had a colonoscopy done and thats when I was told I had LC, and they started me on budesonide. It's all been down hill from there. I have pain way more often, I've been out of work for close to a month, and again, I hadn't been eating much of anything. I tried gluten and dairy free for a month and the pain continued to get worse, so I started eating some things that have gluten again, and I have slowly gotten a little better.

exercise, peppermint tea, anti inflammatories, muscle relaxers etc and nothing seems to help. were these natural antinflammatories or medication based NSAID antiinflammatories?
My gi prescribed me balsalazide

Its tough when then things that should help dont seem to. based on what you have shared, some of what you were trying could have been making things a bit worse.

Spend some time reading the posts and discussions (success stories area, posts by other new people)
we also have a guidelines for recovery that may be of assistance.
http://www.perskyfarms.com/phpBB2/index.php

hope this helps,[/quote]

I am continuing to read as much as I can. Thanks for all the help, I really do appreciate it!
Rachael

Rachaelknatcal · Post by **Rachaelknatcal** » Tue Aug 23, 2016 6:16 pm

Tex,
I was wondering what is safe to use for constipation relief? I know everyone has different triggers, but is there something that a lot of people use that doesn't cause diaherrea or stomach pain? Getting relief from that would help me a lot.
I got Doctors Best Chelated magnesium and am going to take it tonight and see how it goes. From what I've read, it makes people sleepy so I didn't want to take it for the first time this morning. I am also going to order the Entero lab tests today. I didn't know these existed, or else I would have done them a long time ago! I am doing the panel A1 for now, because I can't afford that plus C1 even when they are combined. Hopefully I will get some results to help me figure out this puzzle a little bit better. Thanks for all the help and information!

Gabes-Apg · Post by **Gabes-Apg** » Tue Aug 23, 2016 6:41 pm

Have a look at the suggested eating plan in the guidelines, - some of what you did was on the right track but a few of the inputs maybe caused more issue than benefit

Constipation
I have experienced this as well, some suggestions
- increase water intake
- increase healthy oils like coconut oil
- gentle fibre, small peeled apple, chewed well. small amount of pear juice with water.
- Magnesium - dont be scared your first experience was not the best. good quality Doctors Best magnesium glycinate start low dose and work gradually up to full dose. and using topical magnesium oils/lotions is another way. and epsom salt foot soak / bath is another good option.
- Vit D3 - essential for anyone with digestion issues to help reduce inflammation levels

and the Vit D3 is a far better option to help reduce inflammation levels

hang in there - things will get better.

Post by **tex** » Tue Aug 23, 2016 8:23 pm

Rachael wrote:Tex,
I was wondering what is safe to use for constipation relief? I know everyone has different triggers, but is there something that a lot of people use that doesn't cause diaherrea or stomach pain? Getting relief from that would help me a lot.
I got Doctors Best Chelated magnesium and am going to take it tonight and see how it goes. From what I've read, it makes people sleepy so I didn't want to take it for the first time this morning. I am also going to order the Entero lab tests today. I didn't know these existed, or else I would have done them a long time ago! I am doing the panel A1 for now, because I can't afford that plus C1 even when they are combined. Hopefully I will get some results to help me figure out this puzzle a little bit better. Thanks for all the help and information!

The suggestions that Gabes made should help with the constipation. But in the long run, the constipation is caused by your food sensitivities, probably both gluten and casein, and correcting your diet should end the cyclic constipation problem. Your EnteroLab test results will eliminate any doubt about the main food problems.

It's best to use the diet changes alone if they will do the job. But if worse comes to worst, and constipation remains a problem for the long term, several members have found that they can regulate their motility with a low dose of amitriptyline (Elavil). 10 mg is usually sufficient to do the job. The doses used to treat depression issues are normally in the 50–100 mg range, and in that dosage range Elavil becomes very addictive — so addictive that your body may not allow you to stop using it. So definitely don't use doses in that range. Never use more than 10–15 mg to regulate motility. The reason why Elavil works to speed up motility is because about 90–95 % of the serotonin is produced in the intestines and Elavil stimulates the production of serotonin, which speeds up motility.

But again, it's best not to use Elavil except as a last resort. I have a hunch that after you receive your EnteroLab results so that you can pinpoint your food sensitivities and totally eliminate them from your diet, your symptoms will slowly fade away as your digestive system heals.

And if necessary, you can eliminate a constipation problem by taking more magnesium than needed, or by taking magnesium oxide instead of magnesium glycinate. The RDA for magnesium for women is about 320 mg. Taking the RDA, using magnesium glycinate should have no effect on motility. But taking 2 or 3 times the RDA can cause diarrhea (though not necessarily in every case). This is not an ideal solution, obviously. The suggestions offered by Gabes should be better options until your digestive system is able to heal.

Tex

Rachaelknatcal · Post by **Rachaelknatcal** » Wed Aug 24, 2016 5:28 pm

Thanks for the info! I actually am already on amitriptyline, my primary started me on it 2 years ago for sleep, at 75mgs. I tried to slowly taper off but my migraines came back worse than ever and I could never get sleep. I have pulled an "all nighter" more than once and then crash when I get home from work. That's not fun. I am also on welbutrin for depression and anxiety. Once I start feeling better, I should be able to come off this because my depression was started due to my illnesses in the first place. I'm trying to see if my family can pitch in to help me with the entero lab tests, as I would love to have the A1+C1 panel done.

Gabes-Apg · Post by **Gabes-Apg** » Wed Aug 24, 2016 5:42 pm

The amitryptyline would be contributing the constipation issues
based on the info in your post above, i encourage you to get into the Vit D3 and magnesium, this will help reduce the migraines etc if you want to taper down the amitryptyline.

Post by **tex** » Wed Aug 24, 2016 7:20 pm

Rachael,

Here's why magnesium is so important for treating the symptoms that you mentioned:

Why all migraine patients should be treated with magnesium.

Rapid recovery from major depression using magnesium treatment

Tex

Rachaelknatcal · Post by **Rachaelknatcal** » Sun Sep 04, 2016 7:45 pm

Hi everyone,
So I ordered the tests and I am working on getting it sent back. I've been having a really rough time as things seem to be getting worse. I am hardly eating anything, cheerios with coconut milk and potatoes. I've found that my definite triggers are rice, sweet potatoes, and bananas. At this point, I kinda have no idea what I can eat. I did buy the chelated magnesium and vitamin D3 and am taking it every day. I am also trying to drink more water, but the alternating constipation and diarrhea has gotten really bad, and I'm in more pain than I have been since I was 12. I don't really know what to do now and until I get my test results back I'm not sure what to eat, its been a big struggle. Also applesauce seems to not sit well with me either. It just boggles my mind because this all happened when I was in middle school, the debilitating pain all of a sudden that lasted two weeks and barely got better. Then a few years later, things were so much better and I was eating so much more with absolutely no problem, and then ever since I had the colonoscopy and diagnosis a few months ago things have been going downhill and it's like I can't eat anything.

Rachaelknatcal · Post by **Rachaelknatcal** » Sun Sep 04, 2016 7:45 pm

On the plus side my interstitial cystitis has been fine and I haven't had any pain in that area. I tried to make an appointment with my gi to see if he could help me at all (even though I know this site is more helpful than he would be) but he didn't have an opening for over a month.

Post by **tex** » Sun Sep 04, 2016 8:17 pm

Rachael,

Most of us react to the avenin in oats (in Cheerios). Can you eat corn? Most of us can tolerate Corn Chex (it's gluten-free). Can you eat something like chicken or turkey soup? Can you take Pepto-Bismol?

In a few cases, the cleanout solution used to prepare for a colonoscopy actually brings remission for a few days, or even a few weeks. But in some cases, it can make the inflammation worse. In fact, 1 or 2 brands have been removed from the market because they were shown to cause enough inflammation to actually trigger MC in patients who did not have it previously.

Tex