I'm at my lowest ever: Hi, I'm new to the chat... - IBS Network

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I'm at my lowest ever

Nickster12 profile image
21 Replies

Hi, I'm new to the chat room. I'm 39 years old and was diagnosed with IBS in my mid teens. It seems so long ago but my symptoms have changed massively in the last 2 years. I can go to the bathroom upto 10 times a day, and at times with great urgency. I'm passing blood regularly and feel exhausted. All the blood tests have come back clear however after going back and forth to my GP I was referred to see a Gastroentrologist. He is now performing a colonoscopy next week. IBS is taking over my life at the moment as I'm currently of work with depression and anxiety. I'm so exhausted a sometimes just want to sleep all day and night. It is really affecting my relationship with my husband and children not to mention destroying my confidence. I'm so sorry for the rant but has anyone else struggled like this?

Nickie

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Nickster12
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21 Replies
Jaycey62 profile image
Jaycey62

Hi Nickster12, I can appreciate how your feeling as going through the anxiety as a result of ibs myself..My recent flare up is like no other I've ever had and has got me worried beyond belief..I'm due to get results of 14 blood tests and stool samples and my anxiety has gone through the roof whilst waiting..Hopefully your Gastroenterologist will sort you out and will be able to treat you and get you sorted out..The passing of blood youre having could be Diverticulitis or internal haemroids ..Hope you get better soon.

doctor13 profile image
doctor13

Hi I don't have blood but the other I have and I could sleep for a week

Jonj1 profile image
Jonj1

You poor thing. It's such a debilitating condition. My son has it. He's 15 now and for the last 5 months he has, quite literally, lived in the bathroom. The docs were positive he had coeliac. All his tests have come back negative but he does have something Called eosinophilic oesophagitus which means the cells in his throat have become inflamed and everything passes right through him. Make sure you get tested for this as only biopsies will do. Everything is seen as a threat by his body and it rids itself as quickly as possible. He's lost 2 stone and is a bag of bones. Nothing the hospital gives him works so we are back on the alternative route. He takes silicol gel before he eats and we've just had him intolerance tested He can't eat wheat, dairy,sugar,yeast and soy. As well as citrus, fungus or fermented foods. This won't be forever. We are waiting for something called serra enzyme and colloidal silver to arrive so he can take these as they are anti inflammatory. His toilet is slightly improved only on 4 or 5 times this last week but still for at least an hour so still no school. The stress of it all doesn't help him as I'm sure you know. Will let you know how he gets on with the treatment. I wish you all the very best. It's not fair on you and your family and even if they get cross now and then, remember they love you and are frustrated for you too. Sometimes we all get it wrong and instead of being supportive it looks like we're not but we do understand and we just hate that all you IBS sufferd have no relief and get no help. Good luck and best wishes. You are not alone there are many like you.

Having the colonoscopy will give you a diagnosis - don't be worried just do what the doctor asks

Tanyamm32 profile image
Tanyamm32

Hi Nickie. So sorry to hear you are feeling so low. I have been having very similar issues as you. I am 46 and have had IBS for over 12 years now but over the last year matters got increasingly difficult. I had been so tired with ongoing bowel issues. Was diagnosed B12 deficienct in late Spring and hoped that the loading doses of B12 that I was given would sort me out. Was a little better over summer but things started going down hill rapidly late September. My bowel habits began to change with mucus, urgency, frequency, accidents and bleeding every time I moved my bowel. Most days I was going a dozen or so times a day including through the night. My bloods were clear but I was referred to a gastroenterologist by my GP. I had my colonoscopy last saturday (whole procedure not as bad as I had worried about) to be told I have chronic ulcerative colitis. It was a shock but I have now been medicated for over a week now and I am seeing significant improvement in my symptoms. It is such a relief to know what is wrong with me as I was fearing the worst. The diagnosis isn't great as this will be a life long condition but at least I know what's wrong and can work with the IBD team to keep myself as well as possible. My emotions have been all over the place in the last year but I feel more calm now that I know what I am working with. They have found that inflammatory markers (CRP) in my bloods don't show up and this is the likely reason I haven't been diagnosed before now. My doctor had tested these a number of times over the years when I was feeling really poorly. It sounds like your doctors are doing all the right things for you to get to the bottom of what's wrong. They did tell me that there could be lots of reasons for my symptoms so hoping that your diagnosis will be a better one. Wishing you all the best.

Tanya

bella1999 profile image
bella1999

Hi Nickie, Yes!!!! Although not too bad at the minute! Like you my IBS has changed massively over the years. First five years I was badly constipated and then one day I was standing in the Post Office renewing my passport and I felt the dreaded gurgle and that was it. Total switch. Now sometimes I just make myself comfortable in the bathroom. I bring my phone in, maybe a book, a blanket, a cushion to rest my head on the side of the sink (depending how long I'm in for) and sometimes even a cup of tea (yuck I know). Sometimes I've pain sometimes I don't. No two days are the same for me. I've had the colonoscopies and camera in stomach etc. They've shown nothing. I get blood and mucus too. I know how hard this can be and I too go through flare ups when its much worse than normal and "normal" is bad to begin with but it will pass and you'll get back better control. Try not to let it get to you in the meantime and just know there are thousands of us feeling your pain xx

Nickster12 profile image
Nickster12 in reply to bella1999

I completely understand, I work in theatres and during a procedure I got the need to go urgently it was terrible and incredibly embarrassing. All my bloods have also come back normal. Its just frustrating.

adellaannie01 profile image
adellaannie01

Hi, I am a recent empty nester. The last year of my daughter's school was very stressful and I developed ibs-c. I have been helped by this and other sites, including dr. Axe's. Turmeric and coconut oil, and ultimate flora helped me. But the biggest help is managing your stress levels. Take dead Sea salt baths; they will relax you. Get exercise. Get hugs from ur family. Put yourself on the same level of priority as your family! Best to you, mom from SoCal.

Nickster12 profile image
Nickster12

Thank you all for your stories and advice. I am amazed at how many people are affected by this. Everyone seems to have the same symptoms but yet very different. I am just hoping the colonscopy reveals something. I am so tired anxious and just fed up. Unless you suffer with this condition people just don't understand. I will keep you all posted. Thank you all so much for your support. x

rosco1 profile image
rosco1 in reply to Nickster12

It's so true Nickie,people that don't have IBS don't understand what it's like to have it. My employer is basically calling me a liar when I state my symptoms

Nickster12 profile image
Nickster12 in reply to rosco1

Hi, I feel my employer is the same. My manager said "oh I have those symptoms and I can make it into work", she has no idea. My colonoscopy results were all normal. I don't get the biopsy results for three weeks......I honestly wish something was wrong as I'm fed up trying to explain IBS is not just a sore tummy it is so much more and can destroy your self confidence and result in depression and anxiety. please don't think I'm being flippent I am very aware of bowel disease my husband has crohns and my sister in law had ulcerative colitis although she now has an ileostomy bag. My husband is currently in remission with medication and has been symptom free for 6 years thankfully. I have tried everything and nothing helps my symptoms. I have just had enough. I'm hoping this FODMAP diet will help. I have to try and stay positive...

rosco1 profile image
rosco1 in reply to Nickster12

Hi Nickster,hope your FODMAP Diet helps. Your so right,people dont have the slightest idea what IBS is like,as you say they think it's a upset tummy. I really can't explain the extreme pain I suffer,my GP said if my present painkiller didnt work I would have to be on Morphine Injections.

RayDudley profile image
RayDudley

Hi Nickster12 - So sorry to hear about how IBS has impacted on your quality of life and I hope the colonoscopy will help with a proper diagnosis. I have been scouring the internet and have read on many sites/forums how often IBS and IBD can be mixed up in diagnosis yet they are different conditions. I have been having the exact symptoms .i.e. frequent need for the bathroom, bloody stools (rabbit pellet like and diarrhea though I do have internal hemorrhoids but suppositories/cream have not worked), feeling tired/fatigue, excessive stomach growling, abdominal pain, loss of confidence.

I have just had my second round of blood tests results today and they are generally normal (no inflammation etc) apart from being low in vitamin D and iron/anemic (probably due to the loss of blood on every bathroom visit). I have been prescribed some vitamin D and iron tablets and have also now been referred to a Gastroentrologist (sometime in January - the surgery will call to confirm).

Wish you all the best for next week :)

Patcy2468 profile image
Patcy2468

Hi nickie patricia here you are not alone babe with this horrible ibs syndrome that we have to enjore every day of our lives the misserable pain that never goes & never far from the toilet I sufferedwith it for ten yrs I was never away from the hospital with agony pains and feeling like death only to be sent home with paracetamol untill I got so ill & started to lose loads of weight inspite of eaten anything I got so ill & had to have a urgent blood transfusion becouse I had severe anemia brought on by not getten the right nutrients & eaten gluten which I dident no that was it then I had a urgent biopsy then they sed you have celiac disease now not ibs it has the same symptoms as ibs so if I was you babe I wudent rule it out get tested for it dont do wat I did left it for yrs thinking it was ibs untill I got so ill my sister has that divicurtistis & she has been so ill with it never can plan any days out she has to be near a toilet & she gets really bad pain & dyria with blood in these automunne diseases have the very same symtoms as &ibs &coeliac disease divicurtistis so dont suffer in silence hun see yur doctor take care & be safe patricia

Akikomum profile image
Akikomum

Talk to your GP about drinking Aloe Vera. It's extremely rich and can replenish your body of vitamins and minerals plus all the other possible benefits on your bowels. You'll need the one with no sap (laxative and very very bitter). I can direct you after doctors say it's ok. It's helping a lot of people with ibs...

All the best... don't forget your family loves you, don't put more pressure on yourself! X

gillydevan profile image
gillydevan

Unfortunately ibs can change symptoms I've had it for 35 years it goes away for months at a time and then returns. I have had all the tests over the years. I had anulrssound scan recently when I was in Spain and was diagnosed with chileididi syndrome it is when your colonisation restricted by being to close to liver and stomach wall. l can get different err ING symptoms from extreme wind padding mucusyconstipation and diahoreea. usually triggered by stress worry or eating wheat and dairy and basically anything that makes your bowels contract severely. try not to worry andunderstand whst the triggers are.

rosco1 profile image
rosco1

Hi Nickie,yes I'm the same as yourself. I don't have my IBS all the time,when I do have a flare up it lasts a day or 2. I have extreme pain in my stomach and the runs and like yourself I'm depressed with it + I'm frightened in case I take it when I'm at work + I've been off work a lot with it. It must be the depression,I could sleep 24/7. Can I ask you how you were diagnosed with IBS,I've been told there is not test that can confirm its IBS,doctors just go by your symptoms.

Nickster12 profile image
Nickster12 in reply to rosco1

IBS is normally diagnosed after they have ruled out every other disease. I feel it used to flipintly though. I would wish my symptoms on my worst enemy.

rosco1 profile image
rosco1 in reply to Nickster12

Me neither

Nickster12 profile image
Nickster12

Hi Everyone, I had my Colonoscopy today and was all normal. Dr said he took several biopsies and I will get the results in 3 weeks. He said I have small fistures inside that bleed but are superficial, nothing to worry about. He said i am having severe IBS flare ups due to stress and diet. I am seeing a specialist dietician on January to try a FODMAP diet. Anything is worth a try but I still feel that someone else isn't wright......Anyway have to trust them. Just need to deal with my stressful life in order to get my IBS under control. They have ruled out all the other stuff so it's IBS, I'm so fed-up as people just don't understand the constant pain, embarrassment and exhaustion that real IBS suffers deal with. I hate it when people say oh I have IBS when they so clearly don't. Sorry for the rant. thanks everyone for your support. x

Hiddenaway profile image
Hiddenaway in reply to Nickster12

We do have to remember though that IBS is different for different people. Some people get severe pain some only from time to time but that doesnt mean they dont have IBS, just that their IBS is different

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