# please help. i can't take this anymore.



## SKW (Mar 17, 2014)

Please help. I'm about to lose it as I have had unbearable IBS the last year and half. Without fail, every single day has been entirely miserable. It has consumed my life and I don't know what else to do. Please help.

Background: I've had IBS for 5+ years, but it started off as just excessive gas and bloating, and usually only following a big meal of standard trigger foods. The bloating/distension would go away after a few hours. I also used to be extremely regular and go 3x a day.

Starting 4 years ago, I had my first bout of constipation that lasted 2-3 months. I think it may have been triggered by stress. The doctor put me on a Miralax, Colace, Senna, Amitiza routine. Eventually it went away and I went back to being regular. However, in the last 2 years, I have had regular, reoccuring bouts of constipation that last anywhere from a week to months. The only thing that truly helps me go is a combination of Senna and Colace, which I've now been taking every single day for the last 3-4 months. There are still weeks where it does not work at all and I have to use enemas.

HOWEVER, regardless of if I go or not, as of the last year and a half, I ALWAYS have bloating and distension. ALWAYS. The last year my IBS-C has become so severe - the distension is unbearable and makes me look 7 months pregnant. Most days I wake up bloated, then when I eat, I blow up even more. Even on days when I do have a good bowel movement in the morning, I still experience extreme distension as soon as I put any food in my body.

I have tried countless diet changes. My diet is mostly plant-based with salmon as my main protein, and occasionally chicken. I have not touched things like broccoli, cabbage, brussel sprouts in over a year. I am well aware of Fodmaps and have been low Fodmaps for a year. I am dairy free with the exception of greek yogurt, which I've found does not usually cause any symptoms. I am low Fodmaps. I never eat red meat, and stopped eating chicken - I usually eat salmon and will have chicken maybe once a week. I have tried going gluten free with no improvement. I've also been tested for gluten allergy twice and it said I was not allergic. Now, I avoid gluten probably 90% of the time. I avoid grains - I used to be entirely grain free but have been eating quinoa lately but think I may cut it out. Sometimes, I can eat something every single day for 2 weeks and be fine, and then it'll randomly kill me one day. I have cut out so much that if I keep cutting out foods, there will be nothing left for me to eat. I have kept a food diary for the entire last year and cannot discern any patterns.

My routine now is that I'll take 3 senna and 3 colace every night, and I eat the same thing every single day of things that I've found the least likely to give me issues, yet I still get issues. Breakfast is a piece of gluten free toast with a tiny bit of peanut butter, and blueberries. Maybe a handful of grapes. I am almost always fine with this breakfast. I have to have coffee in the morning in order to go. Once I go, I am usually ok through lunch. For lunch, I'll have plain grilled salmon on kale or spinach (lately spinach, I am thinking I have to cut out kale), celery, carrots, zucchini. Some days I am ok after lunch with minimal bloating, other days I'm dying. For dinner, I will usually have the same thing or something similar - or salmon with steamed carrots and zucchini. By evening, I'm usually uncomfortably bloated. Last week, I tried doing liquid dinners with "safe" ingredients but it did not help, still got uncomfortably bloated and distended.

Meds and other things I have tried, with no help:

-Increased water intake (I drink tons of water)

-Reducing stress (I used to travel 80% for work; I relocated and now I travel at most once a month). I've also cut back 33% hours at work.

-Exercise (I have exercised nearly daily for the last 8 years)

-Amitiza

-Linzess

-Zoloft (worked for 3 months and stopped working, tried again a year later with no effect)

-Magnesium citrate

-Peppermint capsules

-Charcoal

-Gas-X and Beano

-Papaya Enzymes

-Rifaxamin

-Fennel tea, peppermint tea

-Metamucil (fiber doesn't seem to help, just makes it worse. I think I already eat enough fiber with my plant-based diet)

-Chia seeds (they seem to help me go better, but do nothing to relieve distension or bloating)

Tests I have done:

-Colonoscopy - the first was done in 2010, no issues. The second was done in 2013, they found/removed a polyp, found some diverticula.

-Ultrasound

-Endoscopy in 2013 (found gastritis, took Prilosec for months)

-Capsule endoscopy (showed no issues)

-H. Pylori (did not have)

-Thyroid checked (no issues)

-X-rays (to check for impaction - nothing)

-Sitz marker (currently doing this - I had xray #2 of 3 today and the tech let slip that the radiologist said he could not see the markers). On this - I stopped taking my Senna/Colace to do this test. I've still been able to go a little bit in the morning, but it is probably only 1/4 to 1/3 of the real emptying I need. I've been miserably bloated/distended while doing this test. I have not been able to get off the couch.

I've also oddly gained a ton of weight starting the same time that my symptoms began to become extremely severe 12-14 months ago. I have always been thin and never had trouble maintaining/losing weight if I really needed. I started at 118 lb. and am now somewhere at 127-128. The scale has jumped to 131 today because I have been backed up. I can't tell if this is real weight, or backed up stool, or water weight. But it makes no sense as my diet has only improved from cutting out more and more things, and I exercise just as much if not more.

Anyway - please help me. I am about to lose it. I cannot live like this anymore. Please, if you can think of anything that I have not tried, let me know. I am only 26 and it is absolutely ruining my life.


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## annie7 (Aug 16, 2002)

so sorry you're having so many problems. it's miserable isn't it.

i take laxatives and find that the laxatives make my bloating worse but for me it's better that way than not taking them which for me results in not going at all, becoming even more bloated and sick and developing an impaction.

the only other test i can suggest is a defecatory protogram (defogram) which could be useful if you feel you aren't going enough or emptying properly. this test will diagnose if you have any outlet problems like pelvic floor dysfunction or a rectocele, rectal prolapse etc.

good luck with your sitz marker--it's a good test to have but yes getting through it is sheer misery. hang in there--stay strong. it will be over soon and hopefully will provide some answers.


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## tummyrumbles (Aug 14, 2005)

3 cups of tea gets me going and I usually go about an hour after breakfast. Sometimes this takes over an hour, but this is a lot quicker than it used to be. For me the biggest cause of excessive gas was incomplete evacuation. I used to think everything I ate caused gas but it's mainly starches and high FODMAPS that cause digestion gas and this is fairly short lived anyway. The really horrible never-ending gas that used to stick with me all day was from incomplete evacuation. Sometimes your first BM seems full and you feel clear straight after but I know from experience that there's always more. It's these extra smaller BMs that didn't get evacuated that caused most of my excessive gas when I used to have it bad. Try to train your colon to go just once a day in the morning, even if it does take a while until you're done.

Since I gave up all refined white flour, crackers, puddings, rice etc evacuation has been a lot quicker with a huge reduction in gas. Non-gluten breads are very starchy and constipating and you might be better off having toasted wholemeal bread (the toasting breaks down the sugars and makes the bread more digestible) or hash browns (mashed potato, bacon, egg, some shallots).

I usually have porridge for breakfast, which is mainly soluble fibre and gentle on the colon, and an egg too if I'm hungry. I tend to eat salads at work, and there should be very little gas from lettuce, tomato, chilled cheese, olives, cucumber, baby carrot grated - all these are low FODMAPS. If you're not used to this much fibre build it up gradually but these foods don't generally cause gas. It's starches from grains and high FODMAPs that cause gas, foods that most people (not just us) can't digest properly. And it's these pockets of gas that seem to hinder stool as well.


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## esmeralda67 (Mar 15, 2014)

So sorry to hear you're having such a rough time. I have had long-term IBS which peaked last summer for unknown reasons, and since then have done further elimination diet plans. The FODMAP plan was new to me and has helped a lot, but it is still one day at a time. I agree with tummyrumbles that gluten-free bread is not suitable, I am better off sticking with rice cakes. I also have difficulties with lactose, so my diet can feel limiting and unpalatable.

The good news is that I have adhered rigorously since New Year and things are definitely a lot better. It took several weeks to see much difference but there have been real improvements. I am now worrying about it less, which probably helps too.

Hope you manage to identify a diet that suits you and alleviates your symptoms - your story brings back all the pain and worry, and reminds me why I must eat like this.


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## Maegwin (Nov 11, 2012)

Wow, you're so lucky to have been able to get so many tests. I'm sorry that nothing has helped yet but at least it helps to know what you DON'T have. 

I've had severe constipation for over 20 years. I too get bloated after eating anything and even some liquids don't agree with me. I know how you feel. It's really awful and depressing to have your life hindered by this condition.

I've been seeing a gastro for over two years now and all I've gotten from him is a sitz test and laxative recommendations. I've asked for other tests but he keeps putting them off until I try another drug for a few months.

Senna and cascara based laxatives work best for me. I've been taking a combination of the two for 15 years. It doesn't help with the bloating but at least I can get some small daily relief from being really backed up. Before I started taking laxatives I was lucky if I had one BM in 10 days.

Unfortunately the only thing that eases my symptoms completely is not eating for a few days every week. Like you, if I eat daily, even just small amounts, I gain weight. Like I can gain 10lbs in a week just from eating smaller than normal meals of healthy foods every day. It is just food weight but also the bloating makes it really uncomfortable to be active so I'm sure some of it is fat too.

It's not healthy what I do but after 20 years of dealing with chronic constipation I need a break from my symptoms sometimes for the sake of my sanity. Not having gut pain outweighs any hunger pains I get. I've told my gastro about starving to get relief but he said he'll get concerned if I drop below my healthy BMI. I'm careful to make sure I stay just above it so as not to get into danger.

I hope you find something that works. The sitz test is horrible but hopefully you'll learn something more from it, if even it cancels out other causes for IBS.


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## tummyrumbles (Aug 14, 2005)

Gas can also cause constipation. Most IBS-C people seem to suffer from gas as well, and this is mostly from maldigestion of complex sugars.

"&#8230; Therefore, methane, a gaseous by-product of intestinal bacteria, slows small intestinal transit and appears to do so by augmenting small bowel contractile activity."

"&#8230;Based on these observations, we tested the hypothesis that methane slows intestinal transit by altering intestinal neuromuscular function."

"&#8230;It is possible that methane predisposes to constipation because it promotes segmental (nonpropagating contractions). "

http://ajpgi.physiology.org/content/290/6/G1089

Not everyone with constipation has gas. I know someone who openly admits to being stopped up for days but this doesn't seem to affect their work or social life. They have no IBS symptoms apart from the constipation itself and maybe this is because there's no enzyme or bacteria deficiency so they have no problems digesting their food, they just have problems moving it out.

Gas and bloating indicates maldigestion so I'd cut out the gluten-free bread and quinoa as these both cause gas and constipation. The other foods seem fine.

Low FODMAP raw salads don't cause gas but they can cause diarrhea if you're not used to them but we can all build up to them gradually. Low FODMAP vegetables cause very little gas and most of this would probably be the starchy potatoes - but again, this is normal digestion gas and short-lived. The act of eating food doesn't create gas but probably helps to move down gas that is already there. We need to stop the medications because they not only don't help but make things a lot worse.

No-one discusses complete evacuation here much and this is why none of you are getting better. If you feel you can't sit there for a long time consider staying close to the toilet and going back until you feel clear. This isn't as effective but better than going about your day bloated, gassy and constipated. Have as many hot drinks as it takes to move things out as this is the best natural laxative there is.


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## judyann53 (Mar 18, 2014)

SKW said:


> Please help. I'm about to lose it as I have had unbearable IBS the last year and half. Without fail, every single day has been entirely miserable. It has consumed my life and I don't know what else to do. Please help.
> 
> Background: I've had IBS for 5+ years, but it started off as just excessive gas and bloating, and usually only following a big meal of standard trigger foods. The bloating/distension would go away after a few hours. I also used to be extremely regular and go 3x a day.
> 
> ...


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## judyann53 (Mar 18, 2014)

Sorry this is happening to you, this is all new to me. 6 mos ago I had a colonoscopy, nothing (thx goodness), endoscopy something there but the dr is not sure what so I have been labeled IBS. Since then each day is getting worse, chronic constipation. I believe I had something wrong all my life but I just figured it was normal for me.

About 4 years ago flour products started othering me, I have been tested allergic to nothing. I am totally g.f., no raw veggies, proteins are not a problem but I am finding beef is becoming harder to digest and I am starting to loose interested in beef. I cannot have caffeine, not even decaffeinated (love coffee),, supposed to keep away from sugars, no chips, no nuts, I crawl the walls I am a snacker. I also am off all dairy, I do take a probiotic, Fortify, it is better than Align my specialist advised me to take. And finally I am off Night Shade Foods, potato's tomato's, eggplant, all types of peppers As you I have no more foods I do enjoy I am miserable, especially watching others eat foods I used to love. Also if I eat the wrong foods I end up with joint inflammation, wonderful!

I have been on colace, amitiza, elavil, now lenzil. lenzil is working but I believe I am allergic as the others, miralax and colace, itching and a bit of rashes. My chiropractor had me on two types of magnesium supplements, I was up to 4,000 mg a day and did not work, I believe that may have caused some of my problems. My specialists is now thinking of sending me to UCLA to a super specialist he does not know what to do for me. My specialist has mentioned there is a procedure where an implant is placed to help the muscles work in the bowel area to work properly. I am not thrilled with that but in my short period of time of going through this I am almost ready to try something new. You may want to ask your specialist about this procedure. I don;'t know the name of the procedure and not sure I am a candidate.

My chiropractor thinks I have too much yeast in my system but the mds don't see it. My tongue is white and I can feel it a bit but it is hard to get through to a md.

I had all the tests you have, I do have hypothyroidism I feel that is the true problem but my numbers are in the norm

I hope you can find relief soon, I know my 6 mos are miserable and it is getting worse. You may want to speak to your dr about that procedure I mentioned. Have you had a second or third opinion?


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## happymommmy (Jan 28, 2014)

I don't know if this will cause further gas, so weigh this out before you try. I use airborne for constipation. you can buy almost anywhere, walmart, drugstores. It's advertised for colds, but essentially, it has mega vitamins, and minerals. I take 2 with water, helps a great deal.


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## SKW (Mar 17, 2014)

Thank you so much for all your replies. It is so nice to know other people going through this. On one hand I have my parents who are freaking out and worry that I'm dying, and on the other hand I have friends who have no idea what it is like to go through this and just laugh because they think its funny that I can't go to the bathroom.

The doctor's office called and said my Sitz Marker test was fine, that I passed almost all markers. I was shocked because I felt so backed up during those days. It is true that if by some stroke of magic i AM able to have more than one bowel m ovement a day, my bloating is much better - but still, not perfect. I'm still almost always bloated. The doctor wants to try Rifaxamin again, but when I tried it a little over a year ago, I only lasted 3 days - I felt like it made my bloating so much worse. Still, I think I'm open to trying it again because I'm so desperate for a solution.

Your comments about gluten-free bread being constipating are interesting. Aren't they mostly rice-based though? I guess I will try cutting it out and go back to regular bread. Whole wheat should be avoided, though, right? I think I might try spelt bread. The last few days I have cut out both the kale and spinach from my usual lunch salad, and now I just eat salmon on celery and carrots. It hasn't made much difference but I think I will stick it out for a few weeks and see . @Maegwin - I know what you mean - I skipped dinner last night and while I was starving, it was nice to not to be as miserably bloated as I usually am. I think I might just have to eat less and limit my dinner to something like a banana or toast. By dinner time most days I'm already in bad shape, and then putting more food in my body just makes me about miserable by bedtime.

@Judyann - is this UCLA specialist you mention by any chance Lin Chang? I am thinking of flying down to see her.

The defogram test sounds like the right next step. My doc wants me to see a colorectal surgeon. I'm willing to do whatever/try anything. Money is not an issue. The only thing I want is to get better because I cannot let this run my life anymore.


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## Jimmer (Mar 1, 2014)

Sorry you are having so many problems. You might ask your doctor to let you try Polyethylene Glycol if you haven't already. I take a tablespoon with orange juice for constipation and it helps. Also I make strong espresso which helps. If my constipation goes on past a few days I go to Senna and if still no relief I go to Magnesium Citrate.


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