Help

[Losersclub]

The doctor told me I have IBS a few years ago. Every couple of weeks I get a pain so bad that I can’t talk, move and struggle breathing. This will last for 3-4 days at a time. For the first couple I am also constantly being sick. I have ended up staying in the hospital because of this.

I also get the shivers and a temperature. Heat and tea make me more sick and the pain worse.

During normal times I still have a little pain. And its 98% always on my right side. Even with taking laxatives I can only go now and then and mostly in just pellets.

This has destroyed my life. I can no longer hold a job down as I had to take to much time off, and once when working had to be picked up by my mum since I fell down and couldn’t stand back up.

I have stuck to the IBS diet but it honestly doesn’t make that much of a difference.

Honestly I just feel like I’m in hell, I have no life and just in pain nearly all the time. If it wasn’t for Amitriptyline I also wouldn’t sleep for days at a time. I take Buscopan everyday but they are just useless. I also meditate which only has a little effect.

It’s there anything else I can try and help this?

[Nath246]

I have the same problem, It is like hearing someone tell my story. Remember there are others who can relate.

[Carlettejaque]

If you haven't already tried it, but exclude dairy/ lactose for a month checking all ingredient lists carefully.

Don't drink fuzzy drinks of any kind or alcohol. No greasy foods or spicy foods and follow low fodmaps. I had the same problem if I ate anything with high fibre like nuts, beans, lentils etc. Try taking Symprove for a week it gets the right kind of gut bacteria I to the bowel. Might help. Taking medications that relax the bowel means the irritant food stays in the gut longer, irritating longer. I can't take them either. It does sound like an intolerance or maybe several of them. Eat a bland Fodmaps diet for while. Good luck.

[xjrs]

It sounds like you have IBS-C with intestinal nerve pain like me. I am on Linaclotide on prescription for this and it is really helping with the pain alongside Alflorex probiotic, which has been studied for IBS and is available on a free 2 month trial on joining theibsnetwork.org. In combination I am able to eat far more foods including fibre to help with BMs.

[madfox]

Hi there, Sorry to hear that you are suffering so much. I once read on here that the only certain thing about IBS is that it is unpredictable. I have to say that I have found this to be true. You say that you are IBS-C so I can see why the Buscopan will not be helping and may be making things worse. I am a mixture of IBS-D and C but mainly D. so for me Buscopan helps because it slows my digestive system down but I have to be careful not to take it all the time or I know that I will have serious constipation issues. As other people have suggested try cutting out dairy products, so no cheese, milk or butter. If that goes OK and things improve slowly reintroduce dairy and see what happens. If you have a flare up then you are probably lactose intolerant. An elimination diet is good to but only cut out one thing at a time and then after time reintroduce it. I have found that this has worked for me in the past and now I have more or less some idea what will trigger a nasty bout of cramps and IBS-D Hope this is helpfull, good luck x

[Poppi2015]

Do you lose mucus and bloating

[Losersclub]

Thank you for the Tips and comments. Poppi2015- yes.

[Iesgobdafydd]

It might be just coincidence but when I was starting to get IBS I was getting bouts that seemed like mild viral illness every few weeks - a couple of days of being quite tired with little or no appetite, and bedrest would see it off. So the cyclical pattern of your symptoms sounds kind of familiar to me. I guess there could be more than one cause for a cyclical pattern. I tried all kinds of changes in diet but could never really work out food triggers and wasn't sure if it was because there can be a delay of anything up to 48 hours between when you eat something and when you react, which makes it hard to work out what's going on - there were certainly foods that my system found harder to digest and others that were easier, but whatever I ate, some symptoms persisted. I found it helpful trying the few foods diet - cutting down to a very few foods and adding others back in one at a time - it both helped me realize there really weren't specific foods triggering my IBS, and also to find a very boring simple diet that was somewhat balanced and that minimized my symptoms while I looked for other possible solutions. Eventually I worked out that TMJD was causing my IBS - repeated dental traumas and surgical interventions had resulted in my connective tissue being a complete mess, not just in my jaw area but all round my entire body, causing gut pain and digestive issues, persistent fatigue, and many other relatively minor issues. If you think you might have TMJD like me, it is very treatable, but IBS is a pattern of symptoms that can come about for various reasons.

[LittleNewportPisces in reply to Iesgobdafydd]

Wow. All along it could've been my TMJD. I was diagnosed with mildish TMJD when I was like 9 years old. But this never really happened this bad until now. I've got a very painful rotten tooth right now, and the past 3 months I've been in and out of the hospital with severe abdominal pain non stop vomiting high white blood cells low blood pressure and folic acid being overly extremely high! It scares me. The reason I haven't went to the dentist yet isn't just because I can't find ride to save my life rn but I've also always had a fear of dentists cause of my tmjd and a bad dentist I had growing up and still have because i never switched dentists. So I'll have to go back to the same person and place. I'd do anything to make all of this pain and suffering stop. ANYTHING.

[Iesgobdafydd in reply to LittleNewportPisces]

Your dentist might not actually be the best person to see for help. My dentist is actually the only professional I've talked to about my TMJD and she was very nice and helpful and gave me a jaw exercise to do, and said if I went to my doctor about it the best they would probably be able to do would be to send me to a physiotherapist. But I've been told by others that there are other approaches to treating TMJD as well as these kinds of jaw exercises. One person (a retired craniosacral therapist) said that craniosacral therapy would be able to speed up my recovery significantly. I haven't tried it, because I didn't want to invest the time and energy on it and wasn't confident she was right, but it's an option and one I want to investigate in future as I'd like to get my son checked out for possible TMJD at some point. I've also been told (by a non professional) there are medicines you can take for it but that they have significant side effects. I've also had a conversation with someone who has a different connective tissue disorder, Ehlers Danlos Syndrome. She said my doctor should be able to refer me to a rheumatologist for connective tissue problems, and she mentioned malapsorption of vitamins B12 and D as common symptoms also fatigue and muscle cramping, she also mentioned a medication called Maximillo. Again, I haven't tried any of these things, because I had already worked out a self-treatment before I even figured out I had TMJD and wanted to see if it would work before trying something different. I was working on the theory that my body was somehow storing anxiety/stress even though I didn't think I was anxious or stressed most of the time, because my IBS specialist had told me she thought my IBS was caused by stress. So I was seeing if I could use body-mind awareness to find tense places in my body and relax them - exactly the sort of thing we used to do at the end of the yoga classes I used to go to. I was lying down and relaxing, and running round my bodily sensations with my awareness, looking for tension. I actually thought I was getting somewhere with that, but what I worked out after a while was that working individual muscles - repeatedly squeezing and then relaxing them - was a lot more effective than just relaxing them was, in shifting the areas where things felt numb or wrong. I've been spending several hours a day, sometimes more, on this for about a year and a half now, and I do think I'm getting somewhere, but progress is frustratingly slow. But my IBS is a non issue now, I eat whatever I want and don't lack appetite, and instead of picking up every virus that comes within a mile, I can't remember the last time I had one; and the oils have come back into my skin in places where the tension has been decreased, where it's been dry for years. So I'm sticking with it. If you want to try self-help jaw exercises without seeing a dentist, there is a book I was recommended, "Taking Control Of TMJ: Your Total Wellness Program for Recovering from Temporomandibular Joint Pain, Whiplash, Fibromyalgia, and Related Disorders". I got it cheap second-hand online but I had already started my self-treatment when it came and I found reading it was making me more anxious for some reason, so I stopped without reading all that much of it and ended up lending it to someone else. But I read enough to see it had some simple jaw exercises that wouldn't take much time to do and that were supposed to help reduce the problem to a manageable level.

[auntyjean]

It might be worth having a private comprehensive stool test to see if u have parasites and check your gut biome.

[LittleNewportPisces]

This is the first post I've seen that I relate to SO MUCH. Read my post! Same thing is happening to me. Its hell. I'm scared and I have no life now because of it. Right now I am currently laying down and feeling in pain and nauseous. I have no more medicine and no idea what to do. I'm scared I may start being sick again and end up in the hospital, which I will have no ride back because I don't know anyone with a car. I'm scared honestly. Nothing I eat helps, it feels like even water brings me down. I don't know what to do anymore. Constant bad nausea and I have to lay on my back or side and not move at all, standing up makes it worse, and walking is the devil to me. Being so young it's horrible. I'm not sure what to do anymore. I need help. And even the doctors/hospital can't find what is wrong with me. They always either pin it on an infection or stomach bug. I know that's not what it is.

[IBSNetwork Partner IBS Network]

Hi there,

Sorry to hear you're struggling. We understand.

Have you tried keeping a wellness diary recording what you are eating (food) and how you are feeling (mood)? This may help you identify your triggers.

Have you had a look on our website theibsnetwork.org ? We have lots of information to help and support you.

Members can also speak to our IBS specialists.