Suffering for 25 years and need friends and support!! Trying everything and still misereble😥

Hi there!!

I just found this site tonight. I am a 40 year old female who suffers from IBS-D. Recently I weened off my Effexor 125mg that i was on for many years thinking I didnt need it anymore. My stomach cramps intensified (or I could just feel it more being off the Effexor) but my IBS cramps, urgency and loose stool several times a day including gas has really hit me hard both physically and emotionally. I had to stop working this week for now because I just couldnt handle trying to work too. A nutritionist has started me on the FODMAT diet and recommended probiotics and Vitamin D. My PCP put me back on Effexor and Nortryptolyne at night. Im so depressed that this has gotten much worse and has been causing me so much sadness, anxiety, and depression. I feel so alone since no one I know has this problem. Does anyone feel the same way about this?? Does anyone have any suggestions on coping skills?? I wouldnt kill myself but Ive been feeling like I dont know how to keep functioning with all these embarrassing issues.

Love to hear from you🐕

20 Replies

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  • It's a horrible problem with many embarrassments but I think you should find you improve immensely on Fodmaps. I've had IBS 30 years and found Fodmaps four years ago. It's changed my life completely.

    I now rarely have pain, never have wind and take no meds except very occasional Imodium.

    If you have any problems have a look at my past posts as something in those may help. Good luck

  • Thank you so much for the encouragement about the diet😊 Im more hopeful now that it will help hearing from you that it really will!! Im so happy for you that you have finally got some relief. Thank you for reaching out!

    Keep feeling healthy and happy.

  • I looked at FODMAP yesterday and followed the guidance. I also started Silicolgel yesterday. Maybe a coincidence or psychosomatic but have woken up this morning feeling the best I've felt in ages.

  • Thats terrific Shele121!! So glad you are feeling good today. Mornings are the worst for me with horrible cramps, urgency, and loose stool. 2-3 times then its gas the rest of the day😣

  • 🙁

  • You are not alone! Ive have Pudendal Nuealgia since I had a colonoscopy, 16 years ago. This is damaged nerve in the rectum, so I have constant Rectal pain. After being mis-diagnosed, finally put on a phentynal patch for burning Rectal pain. Recently, I got diahrea, & tested high for SIBO. Since I got SIBO, I've had hemoroids & so much pain I can't sit at all. My friends have disappeared, & even my grown kids don't understand (they don't live close by). Only my husband understands my pain. This is what happens when you get sick & can't socialize. I've been on a Fodmap diet. If you want to contact me, my email is acasden@securakey.com, & we can talk on the phone. So sorry you're suffering!❤️Adele Casden

  • Hi Adele😊

    Thank you for sharing yout story with me!! Im sorry you've had to go through all that. I am here to talk as well. Its hard feeling alone, I know! My email is: yelly1119pp@yahoo.co

  • Hi there. It's always horrible to hear when it gets folk down so much as this is as much a trigger as the food we eat. It sounds like you are aware of what you eat and are careful. I think it's all about small steps and patience. Personally, I've had ibs-d for over 30 years, diagnosed which is important, and have found lower dose Symprove has done wonders with Imodium only once a week. Take care and good luck.

  • Fodmap and probiotics help a lot of people. For diarrhoea you need saccharomyces boulardii - a probiotic yeast - for a month or so (I recommend Optibac to my clients). Really helps stop diarrhoea and cramps.

  • So sorry to hear but don't worry you're not alone. I have cried in front of doctors in the past through frustration. I have IBS-D, for years progressively getting worse. I changed to low Fodmap last May which stopped the D and urgency to go. Started a 6 month course of SYMPROVE in October, which is a probiotic (order online) plus download the app to monitor your progress. I take a number of herbal supplements daily, S Boulardii as mentioned above together with Caprylic acid to reduce candida, milk thistle to support my liver, Quercetine & L Glutamine to rebuild stomach lining, HCL to improve stomach acid production, ( I had GERD symptoms) and finally (!) multi vitamins to support the low fodmap diet, includes vitamin D and magnesium to support digestion. It's been a difficult journey at times but I'm proud to say I stuck it out at work through it, mentioned it to colleagues so they would understand. Final mention whilst low fodmap is difficult to start with, wheat withdrawal gave me headaches for 3 days, and I miss my cappuccinos, it is worth it to remove the volume of wind. My cryptonite is definitely garlic, onions, fructose and any gluten products. Very best of luck in your journey 🙂

  • I was diagnosed with IBS back around 1996 and my main problem is wind pain and I suffer more with IBS C. I really feel for you as IBS D is awful; I did suffer with that briefly back in 2015 after I had taken part in the Moonwalk in London - I walked the full marathon. This was the 4th time that I had done this but on that occasion, after I had finished the walk (luckily) I suffered quite a lot with nausea, pain and the urgency to go to the toilet - not easy when travelling on the tube and train (at least there is a toilet on the train but on the tube it was a nightmare!

    Agree in that no-one seems to understand as it's a misunderstood condition and people seem to think 'oh, IBS' almost like it's something trivial - it's surely not trivial!

    I am in the process of getting rid of anything I have with dairy in the cupboard as I'm about to start an elimination diet. I have heard though, after reading many updates on this site, that FODMAP diet is really good. I was assigned a dietician to go on that diet but they withdrew the funding - this is where I think the condition is misunderstood!

    Re diet, I have problems if I eat: onions, broccoli, cauliflower, too much bread, raw carrots (can't touch these at all), too many grapes, sweetcorn and skin on fruits.

    I really hope that this site helps you as I know there have been many people that have suffered/are suffering - I think self help i.e. sites like these, go a very long way in helping people cope with difficult times in their lives.

    All the very best and I hope that you find something that works for you.

  • Suggest you get the Monash University Fodmaps app as that contains a full list of all foods tested so far and is constantly updated as new foods are tested.

    Monash invented the diet and is the ONLY source of correct information

  • I will do that. Thank you so much😊 Im so glad to hear the diet has helped you.

  • Thank you sashapet, I will look at that.

  • Hi,i can totally understand what you are going through,i now know what my triggers are,which are stress,and when i say stress,it doesn't have to be anything major.Nuts,seeds and gluten also set it away and although i know how strict i have to be with my diet,accidents can still happen.On one occasion we were out and the sudden urge started.All i could do was climb over a gate into a field,it was summer time,so i had no socks on and the only paper i had in my bag was a cheque book!!!Needs must so it got used!! Manuka honey from New Zealand is helping me at the moment,it has to have a UMF value of at least 5+.If you google it the facts will be explained.Also Forever Aloe Vera Gel has worked for me in the past,not Aloe Vera juice drink.The benefits have meant that last year i was able to go on holiday to places i have never been before,without any accidents!!!

    I find i take one for several months,then have to change to the other as your body becomes i suppose to used to it and it stops working.

    Good luck,hope this helps

  • Thank you all for your replies😊

    It feels so good to here Im not alone, and to hear your stories as well. Also thank you for sharing what has helped and hurt you. Im so glad I found a community of peole going through similar issues. There is an IBS clinic in Seattle, Wa that I am booked with on Weds but it is a 5 hour flight from me and Im so afraid to fly!! Including the cost of the flight it will be very expensive but Im so desperate to get help and answers. What are your thoughts on going?? Would you go and has anyone ever been there??

  • I feel really fed up about it too - I feel like all the things I used to enjoy have no pleasure in them anymore. I try and stay lively for my children but it is soo hard! HAve struggled with gut health issues for so long- it can't not have a negative effect on you. Ithe does help to know there are others out there too - I suppose we have to keep going and looking for things that can help

  • Yes we do. I guess its the only choice we have. Im here with you and if you ever want to chat my email is Yelly1119pp@yahoo.com

  • Hi, first of all I understand how you feel completely! I've had IBS for around 4/5years now and I'm currently 20 years old - I think I've had it for much longer but didn't realise so it didn't effect me if that makes sense? A lot of my problem is psychological and stress related! I have tried what seems every diet and nothing seems to help. I take Imodium everyday I have to leave the house or I simply cannot cope.. no one understands my pain except my friend who happens to have it as well but not as severe. hope the new diet helps x

  • Thats about the same age i remenber getting it also, in high school. Im 40 now and still suffering from it. Something I wish I did back at your age, go to the Drs now aggressively while you are still young and dont be embarrassed to tell them about all your symptoms. Get as many opinions as you can. I was about 20 when i started seeking help and I remenber being embarassed to tell the Dr ALL the symptoms I was having. I might have been able to get more help earlier on also when I was still on my parents insurance. It makes me sad to look back on all the things Ive missed out on because of this awful IBS. Keep plugging along and hopefully when you are 40 youll have a better grasp on it than I do!!

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