Desperate! Advice sought please...
#74884 - 05/31/04 03:57 AM
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Hi everyone. I've been suffering with IBS since 2001 and unfortunately my symptoms are worsening to the point now that urgency and accidents are becoming way to frequent.
My diet (I'm under my dietician's careful watch!) is now very resticted as more and more food becomes a trigger for me. My "safe" food now consists of grilled meat, steamed fish and rice. No kidding. Suffice to say I'm really miserable missing out on yummy food, eating out (heck going out because of the urgency/accidents!). My dietician encourages me to "test" foods but nothing (so far) seems to agree with my bizarre insides.
Anyway - to get to the point of my post. I initially saw a gastro who excluded IBD etc but I am now considering some kind of elective ostomy although I don't know much about them.
All I figure is that I am now living on the most limited diet known to man which leaves me chronically constipated (so bloated, gassy and uncomfortable) and in pain most days yet anything else gives me d. My health seems to starting to decline now too (bad skin, tiredness with an almost constant bad mood) which I am blaming on my diet. I have tried numerous medications, supplements but found no relief as my IBS is steadily worsening. I've tried two courses of hypnotherapy and counselling but unfortunately no joy there either.
So pretty much I'm wanting to go and see my gastro and beg/plead for any kind of eating-bipass! Whether this would be intravenous food, an ostomy or well whatever because my digestive system has abandoned all reasonable behaviour! So do you think this is is likely to get me laughed out of the room or what!?!
I'm only 22 and I have just completed my university degree and I am wanting to make my way in the world but my quality of life is zero. I am so embarrassed by my bowels that I do not socialise at all, I spend my time with my close family. Leaving the house is becoming more and more traumatic as these d accidents become more frequent. I work part time but am only able to do this because toilets are on hand but my last shift at work I had four urgent d episodes and I ended up being sent home. This isn't a life it's a life sentence. Do you think the gastro will be sympathetic or just fob me off. I am really missing out on stuff here (social life, relationships, employment etc.) and I just don't know what to do as I don't have IBD so does that mean an ostomy is out of the question? Can you have an "elective colonostomy" ???
Opinions and advice appreciated!
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You say you've tried supplements - does that include soluble fibre supplements? If so, which one(s) did you try. Everyone has different preferences and tolerates different supplements better, but for IBS-A (which you obviously have) Heather's Acacia seems to work the best.
A SFS (Soluble Fibre Supplement) is ESSENTIAL for most people with IBS. So if you're not taking one, order some Acacia from the site NOW!
What medications have you tried?
Have you checked out Heather's diet guidelines? What meat do you eat - not red I hope. I assume you have no dairy, coffee, caffeine, fizzy drinks....? Have you tried doing a few days of "what to eat when you can't eat anything" and then adding foods back in? So just eat plain rice, plain pasta, cooked carrots, etc (Heather gives a full list). That's to help settle your system down a bit. It's very close to what you're eating anyway, but you might be including more triggers than you realise. Then when you add anything else in, HOW you eat it is very important - check out what Heather says.
Do you use herbal teas?
To be honest, I don't think that an ostomy would be the way to go. And I don't think a gastro would be at all easy to convince.
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Hi,
Thank you for the reply. I agree that an ostomy is extreme but I feel like I am running out of options here! Food-wise just a few months back I was able to tollerate potatoes, carrots, cottage cheese and cornflakes but now they are definitely triggers. All I am able to eat is grilled turkey or chicken and steamed tuna, cod, haddock or salmon. All varieties of rice are okay too but this isn't much of a list. I am desperate to eat some form of fruit or veg again but guts-wise this is a real no-no. I am worried because in the long term eating no fruit or veg cannot be healthy and I think I must be setting myself up for other problems in the future.
My GP and dietician advised against the use of soluble fibre supplements (I was presribed psyllium) as they left me in agony. I'd be here all day if I listed the medications!!!
Herbal tea-wise I can tollerate ginger and peppermint. I'm just so desperate for a solution, I don't want to spend the rest of my life eating tuna and rice every day. I am missing out on so much but I don't know if my gastro will be sympathtic or if I'll just be wasting my time and upsetting myself even more. It's no fun being 22 with no mates and stuck indoors/near a toilet all the time!
Thanks for the advice though, I'm sure you are right because there must be people in a worse state than me.
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Aaah! Bloody doctors. While psyllium can be helpful, it is also know to CAUSE gas and bloating (which translates to pain in some IBSers! - including me on a bad day). Acacia is a hell of a lot gentler I promise. I don't even notice taking it- except that I'm usually pretty stable!
As you've gone downhill quite quickly, you should really have tests again. You might have an infection or something that's making everything worse. So go and get bloodwork and a stool sample tested. Hopefully an answer will come from that.
Have you tried enteric peppermint capsules? If you can tolerate peppermint (I can't) then they are a GREAT anti-spasmodic. Heather says they work better for her than prescription meds. You can order them from Heather (a good idea if you get Acacia) or you can get them from health food stores or on prescription.
For my IBS-A, I found a low, daily dose of Immodium was extremely helpful when I was stabilising. It meant that I could get on with life and also that I could eat more fruit and veg without getting bad D. Ask your doc - you can actually get it in liquid form if you need a really low dose. As you're swinging (from D to C) so much, this might be a good idea for you - start off at a REALLY low dose and increase it slowly until it helps (without making you too C).
Also, with veg - this might be obvious to you - are you only eating well cooked soluble fibre veg? That's cooked carrots, apple sauce... It's the safest and gentlest way to get veggies.
Btw, please do list the meds you've tried as everyone else will wake up soon and it'll save everyone suggesting their favourite drugs if you already know they don't work!
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Welcome Poorly!
#74920 - 05/31/04 07:17 AM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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I agree with Linzy; in fact, I was just about to respond to your post and tell you all the same stuff she just said.
You didn't say what kind of tests your gastro ran on you. Did he give you a colonoscopy? It's an absolute MUST. You have to rule out everything. An ostomy seems terribly extreme, given the fact that you don't really know for sure what's going on inside, and you're SOOOO young!
I'm 59. I'm also a D. I was a mess before I joined the Boards here and got so much help from Heather, Michael (the hypnotherapist), and these incredible people here in the Boards. I thought I was literally dying inside; at my age, I just knew that all my gut problems were cancer and that this was how I was going to die. It was my colonoscopy that set me straight and assuaged all my fears. I discovered that all I had are diverticulosis and IBS. Then I turned to the Boards and Heather, and the rest is history.
You need a colonoscopy. Ask your GI to give it to you. Then, when you're sure of the diagnosis, follow all the excellent advice from Linzy -- and I guarantee you'll get better.
Bev
--------------------
<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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I am troubled by the GI diagnosis. Linz is right, you need more tests. If for some crazy reason, this doc will not be willing, and I can't imagine that he wouldnt. To get his attention,I have actually reduced myself to tears, GOOD ONES!! There are so many times that the doc's are not HEARING to what you are saying. Do what you have to do to get diagnosed, sometimes we have to fight for our health, if you dont do it, no one else will.
Have you voiced these concerns to your dietician? Has she given you any advice?
Personally, I cannot tolerate carrots no matter how they are cooked.
Do list your meds,there are so many people here that have suffered exactly as you are, it will help.
I am worried about your mental condition, you are much too young for an ostomy,many people have them, your age and younger. We just hate to see you have to go that far, and if the doc says you do, then you do. Have you thoroughly researched this? Spoke with people who live with them? IF not, I urge you to do so, I recently had abdominal surgery, there were many ostomy patients on my ward. Without going into specifics, I thought I understood ostomy, girl, I definitely did not. I left the hospital praying for those people. To have this surgery, you will have to be diagnosed with a grave illness, this is always the LAST approach. Though today, they have a continuim of surgerys that can reverse the ostomy,(for some people,not all) I promise, unless it is the last resort, you dont want go there. Though many people live busy, fulfilling lives with ostomy, that comes with a positive attitude.
I pray you get some relief soon, your body has been through so much. I am so sad for you right now, you are going to get better, it may take some time.
Dont ever give up, with help from everyone here, you stand a chance of drastically improving. You have to re-set your thinking, instead of letting yourself get down because of the food you cannot eat, lift yourself up that there ARE foods you can tolerate. The sadness and anger you are feeling toward the condition of your body right now, are causing you anxiety, and maybe depression. These things do not give you healing power. I have been there too, try the acacia, at this point you have nothing to loose!
goodluck honey, gayla
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Hi everyone, thank you once again for your replies. I am *really* appreciative of them!
First of all I am really warming to the idea of this tummy fiber because ideally some kind of predicable pattern would be nice rather than four days of pain and c then a mass urgent evauation as my innards wake up and realise the backlog!
I am desperate to include fruits and veggies in my diet so I shall persevere and try that form of fiber first then think about a supplement. Anything I should try first / avoid altogether?
Thank you all! 
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Hang in there and don't give up. I have only been on the boards a couple of weeks but it has done me a world of good. I am now taking the soluble fiber twice daily and I have seen some improvement. I am still having some problems but it has all but alleviates the urgency and the accidents. I was thinking of asking about surgery not too long ago as I was just so tired of worrying about my bowels. The people on this board are all so knowledgeable and all of us have the same problems you have been through.
Hang in there.
Valerie
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I want to tell you that while I dont feel that bad-though Ive had those kinds of days-I know how you feel (as do we all). Im 26 and it seems like my life is in pause because of this sometimes. I've told a few friends, but making excuses for everyone else plain sucks. I live with my mother-which was at first a bad thing, but has since become a disguised blessing. I also work for family, so that makes days off, leaving early, and bathroom runs easier to understand. But its not fun.
Its part of a list of fears I still have-getting another job, living alone, friends, a relationship.
And finding out triggers and getting the right foods isnt fun, either. I have days where its broth and rice, and days when I ate fine but still have a problem. Soy isnt easy for me, and there are all those hidden things that some people are ok with and some people cant do at all. I worry Im not getting enough veggies either, but I try where I can and beyond the IBS, I can say I dont usually feel very bad-whcih I can only look at as a positive.
Anyway, when I first got IBS, and before Heather and this place, I was in agony and pain, and angry. I was paranoid about food and sometimes I really just thought I was/wanted to die rather than put up with the pain. But then I learned that there's a lot of us out there, many worse then me, and if they can do it, I can, too.
There is plenty of words of advice on here and some of it WILL help. First thing, as bad as it is, you have to look at the positive and get out that negative energy.
Try the foods Heather talks about. Take all this advice because, honestly, the people here collectively know more than a lot of doctors do. I look at IBS as an almost social disease because the things that tend to help most are things that we can do with others.
But keep fighting because you cant let the IBS win. I KNOW I'll get rid of it because I've basically told my body I will and I wont accept less.
I hope that whatever you decide to do that it helps your life get better. My thoughts and prayers are with you.
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Hi
I feel your pain. I have severe IBS and I'm 21. I had it since I was 17. I'm housebound. I'm doing everything to get my severe IBS-c under control but I can't. My life is hell and I'd rather be dead. I don't know what to do since I'm doing so many things yoga, strong fennel tea, strong ginger tea, eating fennel seeds, taking Acacia, etc. There are so many things but nothing helps a lot. It's a nightmare. I have 24 severe symtoms. I hope you get better soon.
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