Fed up of the suffering

Hi All,I'm not new to this site,I just haven't posted lately.

Without going into to much detail,I've suffered "IBS" if that's what you would like to call it ,for about 10yrs,over that time I've had everything there is to have that the NHS,and private has to offer. The reason for not posting on here was because I believed no one could be of any help,not to say that I haven't answered a few posts.

Well the reason I'm posting now is,I'm at the end of my tether,and I don't know where to turn. I suffer daily pain which I believe the term is chronic pain,I have BM 3-5times a day,but after my tea,I'm in agony right up until I get to sleep,which takes sleeping tablets. My pain is mainly in my pelvic area,and can go right under,to my bottom. But it's getting to be unbearable,all I take is paracetamol and Diazapam to keep me from getting to anxious about it. But if I wasn't anxious I wouldn't be writing this post. Has anyone got any suggestions ,or is in my position. Thanks.

[Ellen6]

Hi, this sounds terrible for you. My IBS doesn't present like this, so I can't really speak from experience, however, have you been fully checked for other problems, such as pelvic infmatory disease, etc.

Sometimes Amitryptiline can be good for pain ( and for some people this can calm down IBS too), so may be worth checking with your GP.

Have you considered trying accupuncture? Unfortunately it didn't help me, but I know it can help some people with IBS.

So sorry to hear you are feeling so bad

[Hidden in reply to Ellen6]

Thank you Ellen,for your reply. But I've been through all you've mentioned,all to no avail. But thank you for the thought.

[Natcat_taylor in reply to Ellen6]

I personally go down a more natural route (no drugs) and follow the low FODMAP diet with regular walking (up to 5 miles a day!). I try to ensure limited artificial sweeteners and avoid foods that end in 'ose' (wind causing) and limit sugar, dairy, wheat & caffeine. It often is down to the food we take in and lifestyle. The food industry has a lot to answer for when it comes to the chemicals they add to preserve food.... limit processed foods and read the labels. Good luck

[Hidden in reply to Natcat_taylor]

Hi ,I would just like to put a few things straight.

I've done the Fodmap diet for 3mths straight ,made no difference whatsoever,you mention the natural way,well sweaters are not natural sugar in low amounts is actually better for you. I only eat fresh food,organic if I can get it,I cook in coconut oil,I only eat butter,not margarine,I drink only,ko ko milk,Charomile tea,and a glass of water by my side wherever I go. According to my GP,my eating habits are fine,I've also seen a nutritionalist. I've had every scan and procedures possible. And after all that my GP plus a whole lot more medical professionals have told me there is no such illness as "IBS" S being the key.

But nevertheless thank you for your oppinion.

[Natcat_taylor in reply to Hidden]

Have you tried re-building you gut flora to aid digestion? I am on 2nd week of (expensive) SYMPROVE and my digestion, bloating and cramps much better. I do a lot of walking too which helps

[Hidden in reply to Natcat_taylor]

Thank you Natcat-Taylor,but I've tried symprove before,and it did nothing for me. But thank you for the help.

[Lainey-47]

Hi I'm suffering stomach on fire can anybody help

[michellevan3 in reply to Lainey-47]

Low fodmap diet

[Lainey-47 in reply to michellevan3]

Thank you

[Hidden in reply to Lainey-47]

Wish I could Laine -47,I can't help myself. But I do empathise with you.

[michellevan3]

Google low fodmap diet and follow it, give up tea. ..it worked for me

[Eternity78]

have you done MRI to your abdomen and pelvic area ?? i follow an account in instagram dedicated to Crohn's disease sufferes ..one of the members talked about something similar to your symptoms ..he did an MRI scan ..and they found (puss) leakage in his lower abdomen ..they have removed it by endoscopic surgery .

Try also starting the day without tea ..and see the difference ..may be it is the trigger to your pain .

Totally feeling your agony with this horrible ibs ..i reached a stage that i no longer can stand up for more than 5 min ..because of severe nausea and dizziness ..bed ridden at the moment ..and the doctor silly smile assuring me that it is just ibs ..make me more sick 😣😳

[tigga]

hi i too havent posted for quite a while for the same reasons you stated,& end of my tether too! i now i cant suggest anything to help as as you may recall im in the same position as yourself,but i really do sympathise . lasted thing ive attended ( recommended by Pain Clinic) is APT (acceptance theraphy) so condescening!!NO I CANNOT ACCEPT i will be in excruiating pain 10hrs a day for the rest of my life!! if the pain could be brought down from 10/10 a lot ,then may be.thinking of you & sorry for the long rant! Ann

[Hidden in reply to tigga]

Ann,I can't empathise with you enough,and as for rant,you rant all you like,I'm with you all the way.

Some of the crap I've been told,is unbelievable. I really don't know what to do anymore. My poor hubby,I'll say to him at times,"I can't cope with this pain" and he'll suggest AE,but that's hours of sitting in a Hostpital ,for them to give me morphine,and back to normal next day. GP,is totally at a loss,and Gastrologist I don't get to see only every six mths at the moment.

It's not just the pain,it's what little life I have left ruined,then it can turn into Depression,I just want to cry,but my hubby feels at a loss then,so puts us both in a bad frame of mind.

At the moment I have got 10mg of Diazapam which helps when I get to anxious,but that's it.

And YOU say sorry for the rant,I could rant for England. Wish I could help Ann,but if you ever feel the need to rant to someone PM me I'm a good listener.

[tigga in reply to Hidden]

hi i couldnt agree more about a/e been there done that! i too only see my Gastro every 6mnth (was every 3 mnth) due this Dec.ive got pain induced depression ,on anti depressants ,highest dose,dont think i would be here if not for t hem.thank you for your kind offer to pm you,i will when i figure out how to!pm me any time , take care.xAnn

[Hidden in reply to tigga]

Hi Ann,I can see your PM,so you have got it right. But I can't get nothing up,it used to be so easy. But give me time I'll work it out.😂🙄

[tigga in reply to Hidden]

many thanks for letting me know! x

[Hidden in reply to tigga]

Still haven't cracked it,I'll give it another go tomorrow I've been busy today. But I haven't forgotten you Ann

Norma.

[Hidden in reply to Hidden]

Hi Ann,Something's gone wrong on my iPad,all my healthunlocked email are coming in my junk so I'm going to delete and rejoin. Speak with you soon.

[Moll3237]

I can totally sympathies with you, I have just stumbled onto this forum out of desperation, I was diagnosed with IBS a long long time ago, I've had trouble with my digestive system since I was 11 which has got progressively worse, the last 3 years things have really ramped up, I have had blood test, poop tests and all I've been told is that there are traces of infection, I lose bloody mucus when I have a bm, sometimes have loose bowels sometimes constipation, I have completely lost my appetite but when I do eat the pain is excruciating within 20 minutes. So I am eating very little I suffer from bad wind ect so the full range of symptoms. The last 3 days I honestly do not know what to do with myself I am in agony, I am having contraction like pains that double me over in pain and take my breathe away if I'm talking to anyone, I am going to sleep in pain, being woken up by the pain with a constant urge to go to toilet but when I go it's tiny amounts or wind which is not even a relief, I feel like I am going mad.. I am keeping a food diary and have had to cut out gluten and wheat on Dr's advice to see how that works, I have also been doing fodmap as my son has developed the same symptoms at age 11 and his specialist put him on fodmap but I have seen no improvement. Sorry for rambling but the last few days have pushed me to the limit and I hate crying! I am already on a wide range of medication for other conditions

[Kerry1971 in reply to Moll3237]

I had the contraction like pain and my tummy blew up like a balloon and was rock hard. I got taken to hospital and had volvolus. I have now had 1/3 of my large bowel removed. Feel for you as the pain was horrific. I was tachycardic and had to have Iv morphine and a decompression tube into my bowel. If the pain gets that bad you need to go to the hospital. I was very ill for 2 years and in hospital 15 times before I got my surgery.

[Moll3237 in reply to Kerry1971]

Hi kerry, thanks for replying that sounds horrible, I'm hoping it's nothing as serious as that I can't imagine how it must of been for you, I hope you have made a good recovery, if that has happened once are you more susceptible to it happening again? Is there a reason it happens or is it just one of those things? How does them removing so much bowel affect you in the long term? I am hoping to get an appointment today so fingers crossed x

[Kerry1971 in reply to Moll3237]

I had my surgery last year so am fully recovered. My bowel was very long, loopy and floppy so kept folding over itself causing obstruction so the only answer was to remove a section. I'm doing a lot better but have to be gluten, dairy and soya free. Hope you feel better soon x

[Hidden in reply to Moll3237]

Oh Moll3237,what can I say,if I had the answer I wouldn't be on here myself. It just makes life so difficult.

This week,I think what made me put a post on ,was the fact that it's getting me down so much,I'm getting depressed,I feel no one cares,and I could fall out with myself right now. My poor hubby getting the blunt of it. Because he's never been depressed in his life,he finds it hard to understand. All I can do is empathise.

And I'm also a bit p....d off at all these different symptoms being called "IBS" it's just a get out of jail card. 🙄🙄🙄

[Moll3237 in reply to Hidden]

I completely understand how you feel, I have felt so low this last week I think everyone has their breaking point, it's really hard to make people understand if you have an "invisible " illness, maybe you could get a few leaflets and leave them around the house in the hope your hubby picks one up, the IBS unbrella is a nightmare every last thing is put down to that and I've heard a lot oh it's the IBS. I think my Dr has realised today that something else is going on with myself because I'm ashamed to say today I had a complete meltdown in the surgery and by the time he examined me I was 😭 my heart out due to the pain, needless to say the next 2 days are full of appointments so fingers crossed I can get some help.... it has actually helped me reading you original post to actually realise that I'm not alone and others do know what it's like to feel this rubbish. Xx

[Patcy2468]

Hi patricia here thry said I had ibs for ten yrs I was in pain constanly untill I lived on the toilet lost stones in weight with not sleeping but they dident test me for coeliac disease 10 yrs more later with being a shell of my self I have coeliac disease they dont allways get it right babe tell them to test you for it you have nothing to lose take care & be strong

[lbknox04]

Gemini72, have you been checked for any pelvic floor issues? Do you have any back, hip, or posture problems that might contribute to pelvic floor dysfunction? I too have ibs that is directly linked to pelvic floor issues which is caused by back issues. It causes terrible cramping, trapped gas, and pelvic pain that changes from day to day. One day it's like a horrible sharp pain all the way across my lowest abdomin. Another day, it's like a hot poker all the way down to my bottom. I've been reading a lot about how physical therapy for the pelvic floor can really help the pain and the Ibs.

[Hidden in reply to lbknox04]

Actually lbknox04, I've given that a lot of thought,I even bought myself I think it's called a Kegal8, but then got worried about doing myself more harm than good,so next appointment I get I am going to suggest it. I don't really suffer with back problems but I do have Osteoperosis,and Rheumatoid arthritis,but believe me,my stomach is hell.

[lbknox04 in reply to Hidden]

I understand. I'm so sorry. I'll be praying for healing and relief for you.