Help im in immense pain despite eating lowfodmap and eating little

[Leïla molié]

Ive seen doctors from emergencies and mine and i have an appoitment with a specialist the 30th but the pain soesnt let me rest and i have a strong sleeping pill that usually help me sleep this night despite ascice to avoid at best i took tramadol and woke up soon 5 hoirs after the pain was back i called the emergency desesperate in pain tired, told me to take another tramadol and they cant do much

I even call suicide hotline because im at the edge with my eating disorder and ibs

 

Help the pain is killing me and the doctors i saw seem not to know how to help with it and advice it not to take frequently tramadol which contrary to the other med ive been given calms the pain but thry told me it gives constipation and is too strong and very addictive. 

I agree its strong and its hard but i need to rest, im lost i need help i ask for help but its so hard to be heard and helped because ibs doesnt kill u so i feel the message is deal with the pain

 

Please please help me give me advice im so tired its painful physically and mentally ive tried lot of led and see several doctors, please if u read this help me please...

[Kylie]

Hello, i see nobody else has replied to you yet, but I have a similar condition to you where it seems to hurt no matter what I eat. I think a part of it also has to do with stress because I know that if i start stressing, it doesnt matter what I eat I will still hurt really bad. I see that you're from France and not America, but I would also make sure that any product that you eat doesn't have any additives that would be considered high fodmap... here in America its everywhere and I can't find anything that doesn't have something that would irritate my stomach... even things labeled Gluten Free are full of painful stuff here....

I wish I could help give you more advice but i'm basically in a similar situation. I hope someone else can also reply to this soon since they might be able to give better advice than me....

[Leïla molié]

Thank you so much for your response in fact it helps me to know Im not the only one to experience this, i also appreciate and im touched you took the time to respond and to tell me, Im so sorry you have to go throught this, i too hope someone could respond us. Ive been suffering from eating disorder and depression since 10 years and ibs started months ago and honestly it was already too much before. When i think about what i ate its hard to see where the problem was yesterday that causes immense pain, i hate food i made: a little bit of quinoa with olive oil and a dish i made of tofu with sweet potato zucchini and carrots tho im not sure if at the time i used the soy sauce that contain gluten it's maybe it, because recently i bought the tamari one without gluten.  Also even when I dont eat Im in pain because of anorexia i didnt for days but pain was still here but very light compared to the very bad pain i experience following eating. 

In all case i wish you the very best too thank you for your response Im touched as im in bad pain physically but mentally too

[Leïla molié]

And for the painful stuff in gluten i believe you sadly there are so many stuff in those. I dont know if its possible for you to buy gluten free flour and try making bread? Its an hassle ofc.. maybe prepare lot of dough you freeze to use later easily 

@Kylie

[Leïla molié]

And Im so sorry to respond in 3 times as im restless and lacking sleep my brain is struggling but yes ive been told stress triggers pain, but im already taking lot of medications for stress so we really are in a no way out i feel like no matter what we do we are in pain (i didnt mention it but i suffer from generalized anxiety disorder since many years surely linked to my other disorder)

Stress isnt something you can control and even treating is so hard if not impossible.  On top of that ibs causes stress and stress triggers ibs so its worse

[Jeffrey Roberts]

So sorry to read how difficult this is for you Leïla molié.

Although not a short term way to help how you are feeling, I think you would benefit from either Cognitive Behaviour Therapy (CBT) and/or Hypnotherapy to try and manage the pain and anxiety of your symptoms. They do take time to have some effect.

As you know, taking tramadol often has its own problems. I have read that Gabapentin and Pregabalin are now being used to manage long term pain. That's something you can discuss with your doctor versus the tramadol.

[Rowan1125]

I wanted to reply to you both and the others who may be following this thread. I have suffered with IBS for more than 30 years. Although 30 years ago no one knew what it was even though I’m sure there were many many people suffering even back then. One of you referred to the hidden dangers and pretty much everything we eat. Beware the sorbitol beware the Manitou beware the sucralose, gluten lactose etc. it seems like everything we eat is danger we never know how it’s going to affect us. I’ve also noticed even eating something as simple as a fried zucchini cooked in olive oil can affect me for days afterwards with alternating bouts of diarrhea or sometimes a surprise of constipation. It’s like throwing the days not knowing if what I eat is going to cause me severe pain hours later. Over the years I have found a few things that seem to comfort and help. Due to my sometimes bouts of diarrhea I now sleep with the large pad under me covering the mattress and protecting it which lowers my stress about messing up my bed using a heating pad on my stomach even when I’m not in pain seems to give comfort. No matter what I’m eating I now take to Bino tablets and two Lactaid tablets before every meal. May seem a little overkill but read the fine print often the food that you would think does not contain any milk lactose sorbitol mannitol and all the other bodies are written in very fine print so I find it’s best to just try and take the tablets which do seem to help control my symptoms before they start. I also take Imodium one tablet every day, sometimes every other day if I’ve had about with constipation. Drinking lots of black tea seems to help also as does the herbal teas that do not contain caffeine. The black tea I drink is also decaffeinated and I do use Splenda for sweetener even though I know it does contain one of the batteries in there but so far it doesn’t seem so bad hope this helps please try at least and let me know if it works. I hate to say it but it makes me feel better to know I’m not alone there are others out there suffering like I am. But I am truly sorry that all of us have to suffer through this and don’t know a day when we can count on whether we’re going to have diarrhea constipation , poop our pants have so much pain we can’t go to a concert or a movie or have a normal life.

[Rowan1125]

To start with please excuse typos as I am dictating this and we all know auto correct sometimes makes mistakes L O L. I noticed someone else posted about using gabapentin. I’ve been taking 900 mg that is 300 mg three times a day for at least 20 years I haven’t really noticed but it helps with the pain and I was off of it for about three months a year or so ago. Again I didn’t notice a difference but other people may react to it differently. Although I’m not offering professional advice on here I am a licensed marriage and family therapist a licensed professional clinical counselor and a candidate as a counseling psychologist awaiting my dissertation so I know a little bit about the effects of stress the assistance that therapy can be to people. Having said that I know a lot of people aren’t really willing or can’t afford to get therapy so I’m going to offer some things here that may help you lower your stress level or at least help you get better sleep and remember I’m not offering this as professional advice just advice for another IB from another IBS suffer. I have found that if I go to my bedroom about an hour or more prior to falling asleep I light a candle, I make my room dark I relax by listening to things that I got from Apple Music such as harp music rain thunderstorms meditation music, whatever type of music or sound that helps me start to feel relaxed. Lying or sitting on the bed I try to just look at the candle flame listen to the music or the thunderstorm whatever and take slow deep breaths through my nose and blow slowly through my lips. I know I know you’re saying meditation, well yes kind of but whenever I used to think about it as something I had to do such as meditation it felt as if my brain put the brakes on and I became more stressed because I thought it was something I had to do , Crazy huh. Now I just think of it as a time when I can charge my batteries back up clear my mind, and focus on my self relaxing my muscles and I do sometimes put the heating pad across my abdomen while I’m sitting on the bed or lying on the bed and just basically trying to relax. So if you can afford talk therapy with a therapist make sure it’s a licensed therapist psychologist do not go to life coaches they are not trained as therapists. This is important stuff people I had a heart attack last year and I had to learn to relax to let go And take care of myself. Hope this helps

[Jeffrey Roberts]

Thanks Rowan1125 for some very thoughtful posts.

[NinaS]

Leila,  I hope you found a solution. I just joined this site today.

In general, I don't think medication for constipation or diarrhea is a good treatment for long-term. The best treatment is to promote regularity with eating times and a daily fiber intake.  One must make sure the fiber you choose is one that agrees with you, some people like myself react negatively to some fibers (like metamucil and inulin) than others (spinach works for me).

As for your pain, hopefully the suggestions above were of help.

In terms of your pain even when not eating, your system (intestines and/or stomach) could be inflamed, they could be somewhat chronically inflamed, and so still suffering from the last meal (whenever it was). 

Think of your system down there as if you bruised your knee and its swollen.  Its in pain even after you had the injury, and is suffering for some time after it, its a bit red and sometimes hot, its inflamed.

As to what foods could be causing excessive inflammation, everyone's system is a bit different.

An  elimination diet would be the best way to find out what currently inflames you (that's not to say that over time and treatment this could change and that you could add the food back in time). 

Since you may probably have already experienced periods of fasting, the elimination diet, may not be so much more difficult for you.

One chooses their base  and eliminates everything else. Then after a time of stability one tries a single new food (small amount)  once a week or every 3 days and waits 3 days to see a response (sometimes responses are delayed in our systems).

My elimination diet consisted of a gut cleanse first ("Renew life Cleanse more") and then I ate only chicken broth, literally chicken, water, and ginger. The longer you cook the broth (like at least 3hrs, but ideally 10 hrs) the more collagen, nutrietnts you get. Apparently it contains a lot of things that can help "heal" your gut. 

I would look into supplements that heal or make your gut feel happier to soften your pain.

Somethings like marshmellow root or an aloe drink (without sugar- this can upset the gut microbe system).

Ask your doctor on repairing gut lining and what anti-inflammatories he recommends (like maybe drinking tumeric).

Your gut/stomach system is in pain, it is most likely inflammed. It could also have an infection, and be inflamed due to an infection. 

Ask your doctors to perform stool tests (if you haven't already done so).  See if they also recommend colonscopy to verify infection. Some infections are only found via colonoscopy. 

You may also want to switch doctors, find an alternative or "integrated medicine" doctor if you're feeling dismissed by your gastroenterologist. But I'd recommend finding another gastroenterologist as well, as its a good idea to get a colonoscopy if all other avenues have been ruled out.

once they find/know which infection (if it is infection) it is, they could treat it accordingly (usually a specific antibiotic or antifungal) and give you  things to help repair your gut as well. Rememeber, if you take antibiotics, make sure to take probiotics to counter it otherwise, you'll have new dysbiosis issues.

Please remain positive. IBS takes time to heal. It took me years, but hopefully with the advice above it will take you less time. 

Best, 

Nina

 

[karen123]

Oh Leila I am in the same situation. I feel your pain because I have it too. Low fodmap is not helping me nor is the Bentyl my doctor prescribed. 

[NinaS]

I forgot to mention, that I was told to consume (and I did) glutamine powder to help repair the gut. I don't know if that will help with the inflammation/pain as well.  I got better (but from a combination of things, not just glutamine).