Posted 07 December 2015 - 01:24 AM
So I've had IBS-D for all my life (although I believe it was just the docs fancy way of telling me he couldnt be bothered to run tests). Recently (over the past 5 months) my symptoms have become unbearable. My food intake is limited to 400 calories a day now, and I can only eat specific foods (i.e. no saturated fat, fried food etc).
Due to family histories, my GP thinks I have IBSD and chronic pancreatitis, but has yet found a test to back up this theory, despite putting me on pancreas enzymes anyway. The doctor in A and E says I have gastritis (even though I had a clear H. Plyori test and no inflammation signs in my blood) so has doubled my PPIs. What's more, despite going to the loo at least 8 times a day, he's suggested I may be constipated, so has put me on laxatives of all things!! Considering the food I eat is barely getting time to digest, and I'm going much, much more frequently than I'm eating, this seems unlikely, but I'm following his orders regardless.
My GP has referred me to a consultant, which should take around 4 months before an appointment is allocated, and refuses to conduct any more tests (i.e. endo or colo) because, I quote 'the consultant will probably do all that when he eventually sees you.' In the meantime, I cannot eat. In fact, I cannot take this anymore.
Christmas is coming. I'm cooking for eight people and I can eat nothing that I'll make. I live on rice crackers (the tiny ones) to get me though the day. I've lost well over a stone last time I checked (I stopped looking because it made me sad). I spend most days in pain, in bed and unable to do my work (I'm a doctoral student so I should be researching but am in too much pain). What's more, if I don't work soon, the university has threatened to suspend my doctorate, which means I will have no money to support my family, and cannot claim off government benefits as the illness is still unidentified.
I cannot live like this any longer. I am a shell of the person I once was. I used to love to cook and bake, to go out with my partner and my daughter, to get up and clean my house, to study and write and think like a human being. This is not living anymore - this is surviving.
My current plan is to see through Christmas, and my daughter's birthday and transfer test results, which should take me to the end of January. After that, if there isn't a diagnosis or some form of help, I am resolving to take my own life. Which I know is selfish and stupid, and I should think of my family, and I probably will think of how much my child needs me and back out of it, but the truth is I don't feel like a mother anymore, or indeed a partner (since this illness has essentially meant the end of my sex life).
I have amazing people around me and I don't want to let them down, but I cannot, and should not, have to live in this amount of pain, both emotional and physical. I try to be strong, but I feel like it is asking too much of me to continue on like this. I shouldn't have to drug myself to eat a tiny portion of food. I shouldn't have to take painkillers to get out of bed and hug my daughter.
If you've read this far, I'll give you a breakdown of my food and med intake (this is the same everyday and has been established through hard work, effort and trial and error).
11am - laxative and PPI meds
2pm - rice cake with half a roasted baby mushroom, a roasted baby shallot, a small slice of roasted courgette and a very small slice of roasted bell pepper. Med - 2 pancreas enzyme tablets.
7pm - a ready meal (two types to choose from) with a saturated fat content of less that 1.5g. Med - 3 pancreas enzyme tablets and painkillers (either paracetamol or Tramadol depending on pain level).
10pm - rice cake with half a roasted baby mushroom, a roasted baby shallot, a small slice of roasted courgette and a very small slice of roasted bell pepper. Med - 2 pancreas enzyme tablets, laxative, PPI and diazepam, plus more painkillers if sore).
Only drink every day - ribena dilute (for those not in UK/Ireland this is a blackcurrant drink you mix with water). This provides me with a sufficient sugar level that I don't faint.
I have eaten this exact pattern of food every day for the last two months. I am withering slowly into nothing. And I would rather be dead than wither.
If you've taken the time to read this all, thank you. It is a rant more than a call for any advice. I think I just needed someone out there to know what I'm planning, or maybe I just needed to write it all down. I'm not sure. Anyway, thanks, and since you are also on this forum, good luck with your own diagnosis. I hope you succeed where I have failed.
Posted 07 December 2015 - 05:20 AM
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Posted 12 December 2015 - 12:05 PM
I'm sorry that you are in so much pain. I'm also suffering with absolutely horrible pain in my upper left abdomen which can radiate to pretty much anywhere. I have also lost weight and have no appetite. I am also getting absolutely horrible anxiety attacks. Hang in there and know that you are not alone in this.
Posted 12 December 2015 - 01:57 PM
If you've taken the time to write this down and share it with us then maybe you do want some help. Nobody can live like this - we get that. Many of us feel like you do.
You need to reach out for some help beyond your current doctor. You need to tell someone (family or friend) how you are feeling and get some help.
If you show up at a hospital you will get some help - in some form - especially for your thoughts of ending it all.
There are simple low residue diets which you will be able to tolerate that will give you some calories and energy.
You are the only one who can reach out for help, so please do it.
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Posted 12 December 2015 - 06:48 PM
So got really bad, did end up reaching out to the hospital and indeed my family members for help. My nearest and dearest are super supportive, however there is very little they can do. As for the hospital/mental health team - they told me that if I told them any plans I had for ending my life they would take my daughter away and phone the police (even if those plans were far in the future). They sent me to an initial assessment, who told me that anti-depressants (which also treat chronic pain) were not the answer, and instead have referred me to a 'mindfulness' class, which should take around three months. Oh, and their solution to my current suicidal feelings - take five times the prescribed dose of diazepam (Valium in US) and try to 'sleep it off'. Some mental health service.
Posted 12 December 2015 - 09:21 PM
Its amazing how little help you are getting from your doctor, not really amazing because I am in the same place. I am not a doctor but I am ACTUALLY going to give you advice, seeing as your doctors don't know what they are doing and clearly aren't helping you. I think the first thing I would do is STOP the laxatives. Your doctor has the be the dumbest on earth to give laxatives to someone who has chronic diarrhea. Forget about eating for taste at the moment while you stabilize your symptoms, eat to survive. I use a liquid ONLY diet. I rotate between 3 meals, and repeat them as many times as I can in the day every 2-2.5 hours. This should give you the maximum nutrition to give your body what it needs to keep fighting while reducing the workload on your digestive system to an ABSOLUTE MINIMUM. You might complain that you don't get the enjoyment of food, well there are plenty of other areas of your life which you can get enjoyment from so don't worry.
Meal 1: Buy a juicer and juice your vegetables. 1 beet, 2 lbs of carrots, 1 apple, 1 handful of parsley. Stir in a half a cup of ground flax seed. The ground flax is important as it bulks up your stool and keeps the food inside you longer for you to absorb.
Meal 2: Soup. Throw in whatever vegetables you want, I would avoid all HIGH FODMAP foods like garlic, onion(other than what is in soup stock), broccoli, cabbage, lentils, and just stick to other vegetables and meat. Cook the crap out of it. When its done cooking, take a blending stick and puree EVERYTHING. No solids left. Have a bowl of this, stir in some ground flax seed(1/8-1/4 cup).
Meal 3: Protein powder whey and ground hemp, milk, plain probiotic yogurt(I like the Kirkland plain greek probiotic yogurt from costco), stir in like a 1/4 cup of ground flax, chug some more water after you are done. Make sure to take lactase enzymes as well even if you aren't lactose intolerant. The goal is the make it as EASY as possible to get your nutrients into you.
With every meal take complete digestive enzymes(I use the webbers brand from Costco but Walmart sells similar products as well). This will lessen the load your stomach will have to do to digest your food. All chewing food does is break it down into a form that is easier to digest. Having liquids only does a much better job of this. If you need to harden the stools a bit more, take a spoonful of ground psyllium husk with each meal. With meal 1 add some L-glutamine and liquid chlorophyll directly into the drink, and with meal 2 just add it in a glass of water on the side.
If you need help to overcome how gross eating the same liquid crap day in day out, I have a trick for that. I find that simply by repeating in my head and remind myself of the nutrition that I am consuming and the benefits that will come from them, that alone can make the exact same food taste a lot better, without having to do anything to the food itself. Taste is as much in the mind as it is from the food itself.
Take a multivitamin. Add a pill of 30mg Zinc and 150mg Magnesium citrate taken together once a day.
This diet should help to minimize the pain you are in. Make OTC Gas-ex your friend. Use a heating pad as well as often as you need to. Try and avoid all oral NSAIDs as they will just bother your gut more and reduce your reliance on narcotic pain killers if you can as they will just do a number on your digestive system.
Also I always reccommend anyone who has IBS or and digestive problems to give the squatty potty stool a try. It is cheap and its one of the products that just works. It will help you go easier and reduce the chance of getting hemmoiriods because you will be in a squatted position while you go and won't have to strain as much. You also might end up clearing out more of your bowels per sitting which may reduce the total number of times you have to go to the washroom in a day. http://www.squattypotty.com/
Final step. Seek out some mental health help. Find a therapist, social worker, counselor etc that you can go to for regular support. Do not neglect your mental health as you are CLEARLY suffering and reaching your breaking point. None of the above will solve your IBS-D underlying problems but it should stabilize your symptoms so that you can continue to hound your doctors until they isolate a cause. It may also give you the time you need to investigate the underlying cause on your own by scouring enough forums and corners of the internet. Don't rely on doctors alone.
Posted 13 December 2015 - 05:56 AM
Yes.. for me, mental health comes first. You need to get your mind right in order to help your body. It will make such a big difference in this journey.
Posted 13 December 2015 - 09:21 PM
Noca, side question - I'm really interested why you suggest stirring in the flax as I usually add them to my ninja when making my smoothie but for whatever reason they don't seem to be doing their job anymore.. could it because I'm blending them in wrong??
Yes.. for me, mental health comes first. You need to get your mind right in order to help your body. It will make such a big difference in this journey.
I make my soups in one big pot. Adding the flax directly into the soup bowl would cause problems, it would get too thick, especially when it goes into the fridge, and would be annoying to serve. I don't add flax into smoothies while blending them cause I find they stick to the blades and stick to the sides of the cup, I just add afterwards and stir with a fork as I pour it into the glass. Definitely don't add psyllium husk into your glass, just take a spoonful of it and chase it down with your drink or soup or you will have a hell of a hard time getting it off anything, it sticks like glue. Psyllium is good to take at the start of the meal to be in front of the food mass in your gut rather than behind it.
Use a combination of the two. Mostly ground flax to add bulk to the stool, and psyllium husk to harden it a bit. Neither will work without a sufficient amount of water taken along with them.
Posted 14 December 2015 - 01:07 PM
I have same as you for 20 years started taking Amitriptyline 10 mg 5 days ago and I am all better now go get a prescription of it.
Posted 14 December 2015 - 05:38 PM
Posted 14 December 2015 - 10:40 PM
Posted 15 December 2015 - 12:10 AM
Add chia seeds to water or sprinkle them on your food - a ton of energy Eat an avocado a day. Fats are healing to the gut. Get your calories up! Ketogenic diet has all sorts of cognitive benefits such as an anti-depressant.
You can buy ground Chia seeds or simply grind them up before hand which may be a better option to get all the nutrtition they offer Unless you soak chia seeds for a long time before hand, you probably won't get the most out of them, epsecially if your gut is already compromised by IBS in some way.
Posted 29 December 2015 - 06:32 PM
I joined this group so I could reply to your post. As a wife I feel many of the same things you have. I have had such bad and long lasting flares that debilitate my family life to the extent that I felt as if it would be better for everyone if I wasn't around and had plans to take my own life. I'd never known such despair and mental pain and it was very scary and distressing for me to fear I might do it. I hope you know that your family loves you and you do have worth and merit, and that while we will never know why this stuff happens to us- we can't give up. We just cant. How wonderful and loving of you to cook a holiday dinner for your family that you can't enjoy, and you aren't feeling well. I didn't even manage that! Hope you are feeling better by now and please post back that you are ok. Please.
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Posted 30 December 2015 - 08:40 AM
I'm dealing with most of the same symptoms you've got though I haven't reduced my Nutrition intake such as drastically.
I usually have to have between 4 - 7 bowel movements a day. Sometimes my Stool is formed, sometimes it's loose. Sometimes I only have to pass Gas. Sometimes the only thing to come out is Mucus. I feel so sick most of the time that I only go out when I have to. I've developed a really bad Anxiety Disorder so my Family is insisting on my going to Therapy but I don't know if that's really working. How can you defeat anxiety over a painful condition that keeps you going to the Bathroom every few hours?
I have a Borderline Personality Disorder as well which means that Anti-Depressants don't really work on me. The only thing that works is Distraction and just trying to get through to the next day.
If you ever need somebody to talk to or a friend just message me. I need more friends that know what I'm dealing with and are more supportive of me other than telling me "I hope you feel better soon". I don't think there is any really feeling better just varying degrees of how sick I feel.
Posted 03 January 2016 - 08:41 AM
Okay folks, so I thought I'd update. Starting off, I'm still here and still alive. I also still feel like crap.
Tried the amitryptline, but had awful side effects and had to stop - HOWEVER if anyone on this forum is going through pain, I 100% recommend giving it a try, as it did clear up all my pain. Unfortunately, it left me with horrible palpitations which meant I couldn't do anything until the side effects had worn off (usually about 6 in the evening), leaving me with an awful post-med hangover to cope with for the rest of the night. In short, while losing the pain was amazing, I just replaced it with a whole bunch of other things which meant I couldn't do anything.
I cooked my Christmas dinner, and my wonderful partner and very kind mother contributed portions of things that were low in fat so I could eat them (as I've found, the lower the fat, the better my body copes). I even had leftovers! I actually had a pretty productive Christmas - while I wasn't free of all the stomach distress, the pain did die down for a good few days and I finally felt like I could relax with the family.
My pain has started up again yesterday, so I'm back to minimal food intake. I've found (despite diagnosed with IBSD) that stool softeners like Laxido have helped, probably because they make me feel like my system is at least clearing itself out, even though the problem is still there. However, it does allow me to eat solid food. While I appreciate all your posts about juicing, I spent two months on a liquid diet, and I would rather die than go back to it.
Shoutout to Michael - I also have BPD (along with PTSD and dysthymia) so I know how much it sucks that the anti-depressants don't work. I finally got to see a psychiatrist (after contacting emergency services about a suicide attempt), who has referred me for 'mindfulness' classes. Not to make a pre-judgement about the NHS here, but I've already been told what I need is DBT, however they don't do that in my area, so I have to go to these instead, which aren't suitable for my mental health needs. Also, they've yet to actually sign me up to these mysterious 'mindfulness' classes, so I guess I'm meant to just continue to wait.
Speaking of waiting - still no word when I will ever get to see an actual doctor about my physical illness. I'm in some sort of horrible doctor limbo, and it's driving me insane. I don't know if my end of life plan is still on - my daughter is going through a hard time at the moment, and the idea of making that worse is stopping me. However, I've started more and more to have stressful dreams, leaving me tired, sore and in a bad mood the following day. Is that really a mother to have around? Sigh, I don't know. I don't have any answers for myself. All I know is I'm moving back to Matso crackers and soup for the next few days, then trying to build it up again once the pain subsides. Take it one day at a time, they say. Well, every one day is just one day less I feel like I can do this anymore.
Posted 03 January 2016 - 01:59 PM
Posted 26 February 2016 - 04:03 PM
Hi, I'm really sorry to hear what you're going through
I have just read about the 'Fast Tract Digestion' diet for SIBO/IBS/GERD and thought it might help you.
It allows carbs that digest really easily like white Jasmine Rice and Thai Sticky Rice. Maybe these will be easier to digest than rice cakes as they are softer? I find rice cakes pretty tough on my digestion.
It does not allow much fruit but you are allowed most vegetables that are not roots (in limited quantities). Fats are allowed - if you find them difficult to digest maybe it would help to eat them separately, as they slow down digestion.
If you are interested here is a link to a calculator for the 'fermentation potential' of foods:
Good luck and I really hope that you can find some answers. Could you get referred to an NHS dietiian?