IBS is going to be the end of me

[Hans7]

It started 1 year ago.

I was 26 and had already suffered for 2 years with an extremely impairing disease (intrinsic rhinitis) which got so bad that I almost couldn't breath, spending my days gasping for air, and living reclused in my dark-lit bedroom. After 2 surgeries and finally breathing again, proving wrong a few Drs., I couldn't even believe it. I thought my life would finally change for the best. But this f**ker was waiting around the corner.

I have always had minor health problems (strong allergies, a small deformity, dental implants/endodontic surgery after an accident, etc) and interpersonal problems (bullying, family problems...), but I always managed to overcome them and kept moving on. My breathing issues were very close to beat me for good, as I was falling in a really dark place, but luck was finally on my side (though I am not fully healed, that's not possible...but I can function perfectly).

The reason of this post is that this sickness is finishing the work the others started.

It begun 1 year ago, after an acute gastroenteritis that didn't heal properly, and I had all kind of tests done ever since. I was diagnosed with fructose malabsorption, gluten sensitivity and lymphocytic colitis, but treatments were ineffective as I still had terrible abdominal pain and bloating. And finally the diagnosis came: IBS.

That was 5 months ago, and my life has been hell ever since. I had to do an extremely restrictive diet (low FODMAP didn't work, and I saw 2 dietitians) to manage symptoms, and my menu as of today consists on chicken/white fish/eggs/rice. Nothing else. I get terrible pains from the remaining 95% of foods. I take vitamins since I can't have any fruits&veggies. Mebeverine has helped the pain (I have to take 3x daily), but it's still there and It makes it almost impossible for me to work (I stopped working and can't restart my activity in my current state). My family don't understand my problem and our relationship has suffered quite a blow, to the extreme we don't even talk to each other despite living together. For them, "it's all in my head". They didn't trust me when I explained the disease, or when the Drs. told them, and I went to a psychologist just to make them shut up. After 4 sessions, the psychologist herself recognized that IBS can sometimes have a mental side, but that's definitely not my case and we can't really do therapy as there's nothing to work on (related to the disease). My family "believed" it but kept accusing me and my attitude, so I just stopped talking to them.

They are right however that I need to do something with my life, and I'm at my wits end as to what can I do next. If the disease keeps like this, I don't think there's any future for me. I feel deeply hopeless about all this...

I am trying everything in my hands, probiotics (with little relief), hypnotherapy (no noticeable relief either), I'm even thinking about amitriptyline for the pain, but I have slight constipation derived from my diet, so it might make It worse.

I don't know what else to do. My mental health is getting really damaged from all this. My career has been shattered. I graduated with the top scores in my University and loved my field, I had overcome so many things and had good future prospects, but my respiratoty disease first, and IBS afterwards, forced me to stop and made It impossible to practice (I can't give more details as I don't want to reveal more personal information), losing a couple of "once in a lifetime" opportunities. Health has destroyed so much in my life, though I know worse cases, but that's not really a relief while I write this lying in bed in fetal position from the cramps and the pain. I am terribly miserable as of now, bloated and in constant pain day after day, with no career, no support, no prospects...

Is it gonna be like this forever? Is there a way out somewhere for this hell? How can you cope with it when life is this f**king difficult? How can you stop the pain?

[Hidden]

I had Ibs for years, it doesn't really bother me anymore. I don't know if it's down to my diet now or my mentality, it might actually be a bit of both. I think a lot of it was to do with stress and I am wondering if stress is playing a part in your ibs. You had seem to have been though a lot of stress with all of your other health issues, maybe it has manifested itself as ibs..

I don't really know what to say to make you feel better.

Do you do anything to try to take your mind off of it all.. anything that helps you to relax?

[Hans7 in reply to Hidden]

Yes, walking, meeting friends, relaxing, hypnotherapy...those things help, but life is stressful as it is, anyway...I don't see stress playing a big role in my IBS, though.

IBS tends to improve in some cases over time, there isn't a scientific explanation yet, they don't know why. But I don't know wether mine will improve, and the pain is very hard to live with, that's the issue.

Thanks for tour comment.

[Hidden in reply to Hans7]

It a complicated thing this ibs.

I hope you manage to sort yours out, never give up on it, but do try to do things to take your mind off it..

Talk to me anytime.

[dg8867]

no joke, but ask doctor for liquid pepcid for the pain, it helped me alot, while i stayed in hospital for 3 days. I have diverticulus, and my c-diff infection returned 3 years later now. I went into hospital have had 3 days of I.V anti-biotics and pepcid thru i.v. It has turned it around for me, possible it could help you. I hope you really get better and make your life good again, especially with your family. Best of luck to you, hope you get better, never give up, the hard times only make you stronger!!

[Hans7 in reply to dg8867]

Thanks for your support, however I would have to be in the hospital to get intravenous Pepcid. It's not something I can do on a regular basis... (plus I used Nexium and other PPIs and they only work for gastric acid, not bowel pains).

My family, I can't really "fix" things with them, not to the way they were before. We may talk to each other again, but I know now that I can never trust them again when it comes to this. And that may be the best for the both of us.

Thanks for the good wishes

[Neil119]

SO SO SAD FOR YOU > MY PROPLEM SEEMS NOTHING COMMPARE TO YOURS>. I at 76 have done self irrigation for 5 years everey day for 5 years. NOT NICE- but you have to carry on LIFE MATTERS my friend

[Hans7 in reply to Neil119]

Yeah, I've been doing daily irrigations& nasal cortichosteroids for 7 years and still do as a form of "prevention", my ENT prescribed it. But my nose is great nowadays, I can't complain (just can't travel to humid locations).

The IBS is what's killing me now, and the constant pain...just can't see a way out and have tried everything.

[Illustrator98 in reply to Hans7]

I think he means rectal irrigation btw

[Neil119]

Keep at it -what else can we all do with this CONDITION FROM HELL!

[Bluetoo]

I take amitirpyline for migraines, but my gastroenterologist was glad I was already on it. It helps calm the muscles in the gut when they are in spasm. It's taken at night and until you adjust to it, it makes you groggy in the morning. That has passed, my migraines are better and while I still have pain at times, it's not as severe as yours sounds. It may help!

[Hans7 in reply to Bluetoo]

Thanks Bluetoo. Did it make you more constipated? That would be the issue for me since I am already constipated and fear the amitriptyline may make It worse...

[Bluetoo in reply to Hans7]

I take Benefiber as part of my daily diet. It helps with regulation of both constipation and diarrhea. I flip flop between the two with very little notice. It has helped quite a bit.

[Kilgh]

Don't negate stress as making this worse. It will chemically affect your gut motility making any IBS far worse. Getting a handle on the mental torture of this condition is the hardest part. Your family are stupid. They are contributing to your issues both physical and mental.

I can tell you that there is hope. I have had horrible times too. But I have also had 5-7 year breaks from this. I'm back in a nasty flare up now but I know it won't be forever. It gets hard to be positive when you are in the middle of it, I know.

Educate yourself on exactly how the gut works from the brain on down. If you can visualise the dysfunction it really helps. It breaks it down into the malfunction parts and how they affect each other.

The most important thing is to lose the stress (not easy I know) because this sends toxic messages to your bowel. You end up in a cycle of IBS-stress-worse IBS.

In my case (and I suspect yours) the gastrocolic reflex goes a bit haywire. This can cause the pain and bloating you describe. If you are currently not working, then I suggest a gut reset boot camp:

Easily digestible foods. Small portions. No harsh fibre. Metamucil (psyllium) with meals is probably the best.

NO drugs that affect gut motility or it won't work.

Wake up at the same time every day.

Eat regularly and at the same times every day.

Go to bed at the same time every night.

Daily exercise. This helps regulate gut motility. Plus if you choose something like yoga it acts like hypnotherapy in distracting your brain from thinking about your gut for a while. Which is important.

Do this for a minimum of 3 weeks.

It is usually effective. If you commit to it. Your gut needs to get back into a smooth rhythm physically. And you need to stop your brain from interfering with that. This is both a physical AND mental challenge.

I still don't know why I have flare ups always, but once my gut is out of sync I know I have to resync it.

Sorry this was so long-winded!

Hope this helps you.

[Hans7 in reply to Kilgh]

Thanks for the tips.

I actually don't have motility issues, my GI said this is a functional disorder, I said IBS to simplify. My symptoms are bloating and pain, I do every single thing you said, but fiber kills me, and the only exercise my body will let me do is walking (it's been quite a blow since I had been going to the gym for 12 years in a row, plus swimming and playing tennis...and now I've been 1 year chained to the bed).

I was thinking about going to the best GI for IBS in my country, it's terribly expensive though and I don't know if I can afford it or get any financial help from my family. He uses lots of different treatments, even old ones like sodium cromoglicate, and is a very active researcher on the field, (he has published articles in American journals)...I know there isn't a cure, but I just need all the help I can get.

[Kilgh in reply to Hans7]

Your gut is having motility issues. It is not moving smoothly like it should. It is in a stop/start pattern hence your pain and bloating. Imagine a rusty conveyor belt jolting along instead of a well oiled one gliding along. Walking is fine. Have you attempted yoga? Or Tai Chi? Or even weights. Anything that requires distracting concentration that you can easily do at home.

You need fibre but not any of the harsh ones. No raw veges or wholegrains. I stick with psyllium husk when in a flare up. Again not the max dosage, gradually add it in.

Have you ever got all the drugs out of your system? They are short term care only. You can't get back to normal function with drugs interfering with your gut movements.

Try the "boot camp". You have nothing to lose. 3 weeks of intense discipline. Get out of the cycle you are locked in.

[Hans7 in reply to Kilgh]

Hi Kilgh. Haven't attempted them but I definitely can't do those in my current state. Just walking is a miracle now...maybe in future stages.

I tried Psyllium Husk starting with one third, couldn't handle it. I can't have about any type of fiber or the bloating & pain becomes unbearable.

The thing about stopping drugs is that I need mesalamine for my lymphocytic colitis, and mebeverine for the functional abdominal pain (I don't take more GI drugs, but these are 9 pills a day). According to my GI they won't heal, as they are chronic conditions, but they might go into remission (they might NOT go into remission as well), and then I could have a break from meds. She completely warned me not to stop them since things can get wild.

I already do the "boot camp", been 4 weeks waking up & going to bed at the same hour, eating the same at the same hours... hasn't really helped though. My case is definitely not linked to routine & psychological factors.

Thanks for the advice anyway.

[Painmainly in reply to Hans7]

This is me. Had a nasty gastrointestinal upset followed by diviticulitus and my gut never recovered. Ever test under the sun including an mri and colonoscopy and laproscopy. Nothing. Still I was in agony every day. Functional disorder I'm told. I'm now on tramodol for the pain . Nothing short of pain relief will allow me to get out of bed. It's been three years now. It's not got better it's not got worse. I can manage the bloating as I know what I can avoid for that and yes chicken and rice were all I could eat before I had pain relief. So no help just to say it won't kill you but it can take your life. Get some pain relief. Finally amitriptyline can help tramadol to work better but I can't stand the fog it gives me. I still get breakthrough pain if I eat bread or red meat or wine but it's nothing like the raw pain without the tramodol.

I wish you well I know how much constant pain can destroy your soul.

Ask me anything

[Painmainly in reply to Painmainly]

Don't mean to reply to myself but just wanted to add. Like you I don't have classic ibs. I have functional abdominal pain. The symptoms are just pain pain and pain every day. Couldn't sleep at night either. No other symptoms apart from bloating. What we have doesn't respond to fodmap etc. I lost nearly 2 stone in 4 months. I was afraid to eat and yes the fetal position was my natural state.

There is no cure. I hope my gut will heal itself eventually but in thd meantime I make no apologies for taking the pain meds. They gave me back some quality of life and I now work part time in a profession that gives me a sense of achievement. I'm a long way from the woman who thought her life was over.

[Hans7 in reply to Painmainly]

Thanks for sharing this. This week I have an appointment with the #1 GI Dr. in functional disorders in my country. Will ask him about Tramadol& Amitriptyline. In my case it's not that low FODMAP doesn't work, but it isn't enough and I have to restrict other foods too. But high FODMAP foods do give me the cramps& terrible pains.

I have to live with my parents due to this and was studying for an important test for a job position. However it's become impossible as of now. It's also very difficult to work in my current state and unemployment rates here are also huge. I would have to move to another country and that's also impossible being like this. I feel completely helpless, unable to move on with my life and dealing with a family which does NOT understand my problem at all. And the problem is getting bigger and bigger...

[Painmainly in reply to Hans7]

I understand. Cutting out certain foods such as with fodmap helps but as you say it isn't nearly enough to function. The way you feel I was there once. The helplessness and despair that you will never have any life again. You get pain relief you can start to come to terms with what has happened and sort your life. You can't change the ignorance of your family. Stop trying. You can only focus on getting some respite from the pain so you can start to focus again. I still get breakthrough pain but I can work and I do have a life again . It will take a long time to come to terms with what has happened to you. Be kind to yourself. The emotional fall out is not to be underestimated it will take a long time for the panic anxiety and fear to pass but it will once the pain is under control. Don't be fobbed off with behaviour management it's not what you need at this point it's relief from relentless pain. Do not pull your punches with the doctor make him see your despair. Good luck I wish I could help more. This isn't ibs it's worse. On an upside it isn't damaging you its a nervous system disorder not one of the gut. It's your nerves and brains misinterpretation of normal function. Took a long time for me to accept that.

Let me know how things go. Hang in there once you get pain relief you are on the road to life again. Chronic functional abdominal pain is a recognised disorder. CFAP.

[Eliana5]

Yes, I can definitely relate. I have lost any quality of life. My friends have given up on me, I have none left, except maybe a few online friends. Some superficial acquaintances. I have no family or support system. It's a very lonely and isolating life. No one wants to hear it. I lost almost 90 lbs in one year..leaving me malnourished and very underweight. Never in my life have I imagined this for myself. It all happened after I stopped taking prescribed opiods. If anyone had told me that (especially my pain management Doctor) stopping opiods can mess up or even destroy someone's digestive system, I never would have had muscle relaxers, Naproxen 500, and Hydrocodone prescribed for me, for severe degenerative back disease. I stopped after seven years of taking all of them, as I was tired of debilitating constipation, that they are notorious for causing. I was even put on Movantik for Opioid induced constipation, which did not help and Relistor. Then they recommended Senna-lax, an herb based stimulant laxative which worked, but not healthy, as I have been on it for years, but it's either that or "C". I tried everything. Fiber made things worse, home remedies did not help, Probiotics, etc. Nothing worked. Only Senna-lax taken once a week worked. When I decided to stop opiods, (I was even on the lowest dose, and once a day). That's when I had even more problems. The nausea came, and lasted for two months. It finally went away, then the lower abdominal pain, cramping. Have had all tests, Colonoscopy, Upper and lower barium follow through, cat scans, Ultrasound, Sigmoidscopy, several ER visits for impaction, three gastroenterologists that have not helped me except prescribe the awful Miralax that makes me cramp badly, so I can't take it, Linzess, awful diarrhea for weeks, fiber which does not work. Then was prescribed Bentyl and Levsin, which helped with cramping and (sometimes lower abdominal pain..but only on rare occasions). I have to have strong coffee many times a week with lots of Stevia sweetener just to have a bowel movement, then on Saturday nights for years, I take Senna. I want so badly to get off of it..as it pretty much ruins my weekends and Monday's. The only days I can really get out to walk or Doctor appointments is Tuesday-Friday. I never feel good..I recently with the help of a dietician have gained 5 pounds, but still too thin. I have to drink protein weight gain shakes, such as boost or Ensure, however I am on disability and Medicare won't pay for nutritional supplements, unless I am on feeding tube. My Psychiatrist prescribed a very sedating medication for me called Seroquel for anxiety, panic attacks and Insomnia, and for some reason, it has helped greatly with pain and cramping, but it is also constipating, something I don't want more of. She thinks it's Psychosomatic, or "all m my head"..but it's not. I have a fear now of eating some foods for fear of constipation and cramping like Pizza or Tacos. I try to eat three meals a day, but sometimes, I am so backed up, can only eat two very small meals a day plus the shakes when I can afford them. I'm tired of "tests" have had them all..Doctor's day nothing wrong with Intestines or colon, other than large internal hemmorhoids from constant straining. Stool softeners do little either. I'm at a loss. Was just put on Trulance, but it's just sitting there (samples) on my counter untouched, for fear of diarrhea, as it is much like Linzess. So, I too feel very hopeless and this is no way to live.

[Kilgh in reply to Eliana5]

Yes. Damn drugs can mess you up big time. And it takes several months drug free to get things right again. So something like metamucil doesn't work? Your gut is like a muscle (well, not like, it is). It gets weakened if drugs (coffee being one of them) do the work for it. It is like you have to rebuild your gut muscle and reflexes with exercise and minimal help from drugs. Like all exercise there is no easy fix to rebuilding muscle you have lost due to illness.

[Eliana5 in reply to Kilgh]

I have been off opiods for several years. And have never recovered. Some people do..but I never have. Fiber makes things worse..for many IBS and constipation sufferers. Look up gutsense.com. Or "The fiber menace" on Google. You Will find out why fiber is actually not that it's hyped up to be by misinformed and unhelpful Gastros and Doctor's. Our colon goes up right? Fiber and Fiber supplements such as Citrucel, Psyllum Husk (Metamucil), Fibercon, Benefiber, Konsyl, etc..bulks up stool. That bulked up stool and the added weight has to travel..up..up..up our colon. Then all that bulk, has to come out of an anal opening that is just less than the size of a quarter, creating possible anal fissures, hemmorhoids and even worsening the problem and does not help..it just creates more bulk and stool with a person already constipated. I find I do better in a low Residue/Fiber diet for constipation. We have all given you great advice and have had several replies, yet you seem to object or confront anything each person says to try to empathize or help you. Maybe best thing for you is to see your gastro since each and every reply you don't seem to like on here. I hope you have a good week, and feel better soon.

[Kilgh in reply to Eliana5]

Several years off the drugs and still not right. Dang. I remember when I was IBS-C back in my 20s I sometimes had to resort to a power hospital grade laxative to get things moving again. Happily Metamucil works for me nowadays. Harsher fibres can be a torture though. I try to minimise them.

[Eliana5 in reply to Kilgh]

It's okay, I'm getting things sorted out. Glad the laxatives are working, and for you as well. Have a great week..

[Kilgh in reply to Eliana5]

Thank you for educating me. Metamucil is apparently not helpful for IBS-C. Which explains why it works for me now as I have IBS-D these days. Always learning something new on these forums.

[Hans7 in reply to Eliana5]

You confused me with Kilgh, I haven't been able to see the new comments until today.

I didn't "object" comments, but some people suggested alternatives I already ruled out and I had to explain them why, since, in order to explain every failed treatment I've had, I would need to write a book and not a post.

Your story does sound exasperating, I can't give you any advice, except that my constipation used to last 10-15 days (until I used a strong laxative, or a combination of them), and it turned out I had lymphocytic colitis (appart from IBS and Fructose Malabsorption), and the mesalamine made me go daily again (still constipated though, I always have Bristol 1 stools). However, it seems you've already been tested and It wasn't an issue for you.

I know it's not the best comfort, but being on disability may be a little help, though I don't know if it's because of your IBS. In my country that would be impossible, even with brutal cases. I also understand that no one wants to be in disability and left alone with this quality of life, but it could be worse if you weren't.

By the way naproxen and NSAIDs can create havoc the second I take them, haven't had them in years.

Thanks for your comment

[Eliana5 in reply to Hans7]

Sorry about that, my bad. Didn't mean to tell my "entire life story" a bit rude. I was only trying to say I could relate and empthasize by sharing my experience. Won't happen again. Have a great week..☺

[Eliana5 in reply to Hans7]

Not looking for "advice". I was just trying to empathize and share my own experience. I am sorting things out with my own issues, and in a better place in my life right now, compared to what I was. I really can't blame the opiods. I have been constipated since a child, but I am strong and will make it through. 👍☺. I have been on here a long time, and have already been given great advice. Have a great week.. ☺

[Stevington]

Dear Hans,

You seem to be in a really difficult place. I notice that you are 27. Crohn's and IBS typically appear in one's mid 20's and then move into periods of remission which typically last for 5-10 years apiece, so hang on in there. This will pass.

I had 11 operations within the first 9 months of my diagnosis. However, that was in the days when pharmaceutical treatments were few and far between. Now that there are so many to choose from, I wonder whether there might be a tendency to jump from one treatment to another and double load so that it becomes hard to see whatbis working and what isn't. I suggest that you find a doctor whom you trust and ask him to review the whole range of medication you are on. Some of the items you mention are known to slow the gut and cause constipation.

Reading the whole string, it also looks as if the gut problems you have may be not just IBS, but perhaps also the aftermath of the opioids. The gut is quite slow to react sometimes and it likes routine. Try to see if you can manage three weeks of a varied diet, but always in small portions. Forget pizza and tacos. You need to eat real food without piles of salt and fat. Try roasting a chicken at the start of the week and then making it into pies and soup as the days go on. Aim to have at least two vegetables with each meal and vary the range of veg you eat. Try to eat and sleep at roughly the same time each day. Things hurt now, but gradually, your body will get used to what you give it on a regular basis and relax. I had 11 operations in my mid twenties and then things called down. I have had 18 operations now, but 30 years on, I have a really great (and demanding) career, a husband and daughter. Your head is the key to getting through this. Research, listen and be cautious in taking loads of drugs. Each one may only work on about a third of patients in any trial, so you need to let your head control your gut. There is lots of research that shows the gut affects the brain and vice versa. Good luck and stay strong. Your resilience will form your character and make you a real catch as an employee, spouse and friend. 😊

[Hans7 in reply to Stevington]

Hi Stevington.

Thanks for your comment. In your last paragraph you confused me with Eliana5, who told her entire story up in the thread, I haven't had opioid issues.

I really want to believe It will pass, but Drs. don't want me to raise my hopes and they were clear that this might become the new normal and I need to get used to It and start trying meds. I've also seen lots of IBS cases on forums and many sufferers are f**ked for years and years and nothing works (see the case of Eliana5). Maybe the remissions are more common in IBD? I have a friend with Crohn's, he has terrible times every few years, but then gets better and can be perfectly well for 5 years...until the next flare up.

I like the GI I have now, but she's not a specialist in IBS, that's why I thought about changing to an expert in the field (incredibly expensive though, but may be worth it).

[Hidden]

Hi there,

You have really been through the hoop again and again. And I can totally understand that this feels like the last straw. I want to give you some hope and courage. I was in a very bad way a few years ago too. And I have completely recovered from chronic IBS.

Everything you are describing has one thing in common: inflammation. And inflammation occurs when we are in friction with the life we are living at some level, when we are making it, or ourselves, wrong. The good news is that your body knows how to heal. If you tune in and listen to it: sickofibs.com/well-being/fi...

This article might also resonate with your experience of situations going round and round: sickofibs.com/ibs-triggers/...

I hope this is giving you a little hope and courage. It seems impossible, but you can get back on track.

Alison