Six months of chronic diarrhoea: So, I've had... - IBS Network

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Six months of chronic diarrhoea

Eatpower
Eatpower

So, I've had six months of chronic diarrhoea. I'm tee total and I'm also vegan.

I'm tired of this.. I've lost ten pounds of weight. The NHS don't seem to know how to treat this, and I'm inclined to terminate my life. I'm 28 and I'm not living, I'm just existing and it breaks my heart to know so many people are living their lives and I can't because of this.

I don't know what to do anymore.

36 Replies
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Eat power, I had to answer your post as I know my hubby feels like giving up. He has had diarrhoea since Oct 17 and the last few months we have hardly left the house as he needs to be near the toilet all the time. If you read my earlier post you can see we are eventually getting help. He hardly eats but that doesn’t stop the chronic diarrhoea he has. He has lost 10kg this year and is now so thin. Please don’t give up, I won’t give up on my hubby so I am trying everything to get him well.

Eatpower
Eatpower in reply to Bazmack

I cried when I read this.

I wish my ex had the strength to stay strong for me, but she gave up on me because she couldn’t cope with my illness and she was never really there for me.

Your husband is really lucky to have someone as supportive as you.

Eliana5
Eliana5 in reply to Eatpower

I just about did too..all my "friends" Have left or given up on me..making for a very lonely life. Dang..this illness. Taken over my life. Have no social life left. Sorry, didn't mean to butt in..

Hidden
Hidden in reply to Bazmack

Hi,

Just read your previous post and see that your husband is having a SeHCAT test end September. In the meantime, he could ask to have a trial run of the medication used to treat BAM which will give him a quicker answer, doctors will do this.

Bazmack
Bazmack in reply to Hidden

I have tried to get medication prior to SeHCAT but they will not prescribe anything. I have managed to get the test done earlier..3 Sep and then 10. Looking at the guidance notes it looks as if you have to stop taking that type of medication 2 weeks prior. Rang docs yesterday and was promised a phone call, of course nothing! Can’t really afford to keep paying out for private treatment as we are on limited income. Thank you for taking the time to post a reply.

Hidden
Hidden in reply to Bazmack

Glad to hear you've managed to move the test appt forward, I hope it turns out to be BAM as it's so easily treated. Fingers crossed!

Bazmack
Bazmack in reply to Hidden

Everything crossed. He just got out of bed to see grandchildren and had a dizzy turn. I am sure this is because he hasn’t eaten much. Rang surgery and again someone will ring me back!

Hidden
Hidden in reply to Bazmack

Yes, doctors aren't what they used to be are they? I think you're right in that lack of food is the probable cause of his dizziness. Might he be okay (-ish) with the drinks that are given to invalids and convalescents who can't eat?

Bazmack
Bazmack in reply to Hidden

We are waiting for ambulance. His blood pressure is not bad lying down but crashes to 60/30 when he stands. He has a bed waiting for him but it is about a 2 hour wait for ambulance.

Hidden
Hidden in reply to Bazmack

Oh dear, I'm so sorry about that. Perhaps when he eventually gets to hospital his condition might be taken more seriously. Who knows, he might even get SeHCAT scan done in the next few days.

Wishing you both well, do keep me posted.

Bazmack
Bazmack in reply to Hidden

Thank you Pagan 1,he is going to emergency floor, he has been there many times. Paramedic thinks they will get him stable and then send him homebdcsuse of bank holiday weekend!

Bazmack
Bazmack in reply to Bazmack

Oops because... predictive text

Hidden
Hidden in reply to Bazmack

Like I said previously, doctors are just not what they used to be. Bank holiday my foot!

Bazmack
Bazmack in reply to Hidden

Just seen a junior doctor, running more tests, taking more blood. Having to gown up etc. Think his liver is causing part of problem! Not very forthcoming, just told to wait for tests.

Hidden
Hidden in reply to Bazmack

Well, at least somebody seems to be doing something for your husband and you just might get some answers.

Have you mentioned to the doc that he's awaiting SeHCAT?

Bazmack
Bazmack in reply to Hidden

Yes I have. It would be good if they could do it sooner. I understand the special tablets are ordered ready for appointments so they may not have our tablet yet. Again the dreaded bank holiday mentioned! I am leaving at 6 as friends are picking me up as I don’t drive. Will get several buses in the morning to get here, takes a good few hours but I don’t like taking advantage of friends generosity. Have a good bank holiday weekend.

Hidden
Hidden in reply to Bazmack

I hope all goes well and that your husband can at last get some appropriate treatment.

I don't suppose the holiday weekend will be a very enjoyable one for you as it seems you'll have to spend most of it travelling, but you never know, it could all be well worthwhile.

Very best wishes to you both, I do hope you'll let me know the outcome of all this - send me a private message if you can.

Bazmack
Bazmack in reply to Hidden

Silly question, how do you private message on here?

Eliana5
Eliana5 in reply to Bazmack

I eat like a bird now. Always use to eat very well and cook a lot before this illness..but now, I never feel good enough to cook a meal..so everything I eat is processed, "quick foods" which is not healthy. I'm with a dietician to try to get me to 145lbs from a pathetic skin and bones 119lbs..never in my life did I imagine this for myself. I have lost 100 pounds since this time last year, making me 20 pounds underweight, malnourished and hair loss. She has me on Ensure twice a day, but my insurance won't pay for nutritional supplements, unless someone is on a feeding tube. I'm currently looking for some kind of weight gain powder, but so many out there..it's confusing.

Bazmack
Bazmack in reply to Eliana5

Hubby will be seeing dietician while in hospital. We had a booked appointment for 3 Sep, we had to insist our GP referred us. She thought he should make himself eat. Silly woman!

This is a difficult condition, but you are way over reacting. Have you seen a gastroenterologist? If not, you should. You will Probably be directed to the FODMAP DIET. You can look it up. The best site is Monash University, where the diet was invented. You can work on the diet with a fodmap trained dietician. Usually probiotics and peppermint pills are suggested. This combo may provide adequate relief. Many people have IBS and, indeed, many many have far more serious abdominal and intestinal conditions.

Eatpower
Eatpower in reply to b1b1b1

I’m not overreacting.

The FODMAP diet didn’t help.. you have to understand everyone is different, and responds differently. I’ve had this problem for well over ten years now and it’s caused me misery and made me lose the love of my life.

I’ve seen a Gastroenterologist and they don’t know what they can do for me anymore.

Eliana5
Eliana5 in reply to b1b1b1

Many of us, have felt this way at one point or another. It destroys the quality of our lives, and even our relationships. Many of my friends Have given up on me, due to this very debilitating condition. Please try to be more empathetic. This is a support board. No feeling is "bad".. We are only human.

Eatpower
Eatpower in reply to Eliana5

Who were you replying to?

Eliana5
Eliana5 in reply to Eatpower

The poster who mentioned "overreacting"

Hey there Eatpower. I'm so sorry you're feeling like this. Please don't feel like your best option is the worst! Your ibs can be triggered by food but also by stress and anxiety. Can you go to your doctor and tell him/her what you're feeling? Treating your depression is so important and might even help with your ibs. Please reach out to someone and get some comfort and support.

Eatpower
Eatpower in reply to Chiff

I’v had loads of tests the always comeback as inconclusive.

(Please don’t take offence as the context is not intended to be horrible)

I always feel that when someone say “Stress and Anxiety are the cause” they just don’t know what the true cause is.. I can’t see how someone can avoid stress, it’s apart of life and it’s unavoidable.

I don’t think me wanting to terminate my life should be seen as depression, I think it’s a sensible choice so I can avoid the constant chronic pain.

Hidden
Hidden

Hi,

Sorry you're feeling so low. What tests have you had to try to determine the cause of your symptoms? Since you say you have continual diarrhoea, have you had a SeHCAT test for bile acid malabsorption which is very often the culprit?

Cat

Eatpower
Eatpower in reply to Hidden

They have been useless to be fair. They have done blood tests and stool tests that always come back normal.. they always say “We don’t know how we can treat something, if we can’t identify what the cause is” or “If we had a magic wand i’d make it better”

Hidden
Hidden in reply to Eatpower

Ask for a SeHCAT test as I've suggested, you could well have bile acid disorder and I suggest you read about it on the web.

If you can't get the test done, ask your doctor for a trial run of the medicine used to treat it.

Eatpower - I had my doctor prescribe Welchol for me and it stopped my chronic diarrhea in it's track! It was expensive, though, so I had him switch me to Colestipol..which does exactly the same thing. These 2 drugs are bile acid sequestrants and are used also for high cholesterol and to treat type II diabetes..neither of which I have. Tell your doctor to let you try either one of these...they will change your life...you're only 28...don't go the route you're talking about taking.

Have you had a colonoscopy? That might help to pinpoint problems. Also make sure you do not have celiac or chrones diseases. Can you get a second opinion. I am sorry you feel so badly and I understand that saying problems are due to stress doesn't provide an easy answer. Chiff, however, is correct in that stress can cause physical problems. The real issue is that IBS is a poorly understood condition with no solid treatments. xx

Please don't give up. Fight.Try to see a good gastroenterologist, that can prescribe something for it, and test you for food intolerance, gluten intolerance (Celiac disease), or even dumping syndrome or leaky gut. It's not worth your life, which is very precious..when an answer could be just around the corner. Most of us on here have had to live with chronic constipation and IBS since children. Keep insisting on tests. Eliminate or reduce caffeine or lactose, dairy too..

I first started experiencing pain way before I was diagnosed, but when they gave me an ultrasound they found gallstones, and i had surgery to get my gallbladder removed, after that the doctor told me i should be able to eat whatever i want, well that wasn't the case. I was fine for awhile but then it started coming back so i told him and he sent me to a gastroenterologist where he diagnosed me with ibs, and it's been nothing but downhill since. I've been prescribed like 6 or 7 different medication all with different instructions. But they only mask the pain. And I really dont even want to go to the doctors anymore because they will send you to a different doctor that will just end up saying "well that sounds like common ibs" as well and now you've just spend a lot of money to hear the same thing you already know. Currently getting blood work and MRIs done after 2 years of having this problem. Just had another ultrasound and the doctor was actually really upset she could see anything wrong but I still have so much pain. I'll see how it goes. I hate not remembering what it feels like to be normal. It makes me not want to go out and do things because I'll just have to use the bathroom constantly and I dont want to be stuck in a situation where there isn't one around, because holding it in makes it worse. I'll sometimes use the bathroom like 5 to 6 times in an hour because it just won't all come out at the same time. Heavy lifting will trigger me to use the bathroom. Stretching in the morning can hurt as well. Speaking of mornings, thats the worst time it acts up. I usually end up rolling on my stomach dealing with it until it goes away or, if I have the chance, fall back asleep. I feel like getting punched in the stomach would probably kill me. Really can't drink with my roommates anymore because I dont want to deal with the consequences. And I dont eat a lot of red meat so I can't really say if that effects it or not, I'll have a little every now and then just for protein. But smoking cigs helps me have to use the bathroom which helps make the pain go away. But I'm really trying to break that nasty habit. And smoking weed makes the pain go away but it also makes me want to eat more than I should and makes me not realize how fast I'm eating. So in a sense yes smoking makes it worse but then again it also really doesn't make a difference. Because if you can control your food intake, marijuana will help ease it like pain killers. But I've noticed that deep breathes in and out slowly can help with the pain and movement of things in your stomach. At times I'll have to just bend over and take it for a few mins. Because it gets so painful for a few mins. Then goes away. Other times it'll last for hours. Its random.....sometimes. but you should try deep breathes (usually helps things move along in your stomach) until it passes. People usually end up asking wtf are you doing, but I dont need to explain myself haha. Stool movements are rarely consistant looking. I can literally always feel every movement and hear every sound my stomach makes. Its depressing. And for people who have never experienced ibs will never truly understand what we go through on a daily basis. And to be told you have it for the rest of your life is heartbreaking. I'm only 24. I've had my couple of times where I've cryed from the pain. But it's just something I'm learning to deal with. I'm lucky I still have my mom by my side helping me with payments and support. But yeah that's my life. Hope this helped in any way.

Hi, I don't mean to butt in..but can relate and empathise. People don't understand, or "want to hear it" Gastroenterologists, ER Doctors, GP's are dismissive or say the same thing "stool softeners, more water, don't forget the fiber!"..if so easy, I tell them why I am there for? I don't know if you have IBS-C or IBS-D, but have you tried Levsin, or Bentyl? I am drinking "Ensure" a nutrition shake to gain weight, and it Seems to calm my stomach..

So totally get where you are coming from. 12 years of chronic ibd-d after total resignation went to a doctor Who prescribed famotidine. Instantly gone. Went from 2 years dropping soup in the toilet to it completely gone. I’m not sure you have already tried this , but if not it’s worth a shot.

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