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diabulimia

do you think there is enough information regarding diabulima?

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Hi guys just had some good news I wanted to share I've just joined the Dwed (diabetics with eating disorders) a charity who specialise in helping people who have diabulima even though I've joined their group of directors as part of getting something done for Wales but also in regards to fundraising for the whole of the UK! Am over the moon with the response from diabetes forum thanks for all your help
 
@sarahpench Brilliant news Sarah, you have a great attitude and will do very well, good luck and keep us posted on your progress
 
hi Sarah I was diabulimic at the age of 18 I am now 37.There are 87% of teens who go through this way of losing a lot of weight.I had postnatal depression that started mu bulimia off.My HBA1C was 21.0 I went from 15st to 4st 12lb.You do not know what is happening inside your body with this dissorder so I would love to share with you all what happened when I realised I needed help.I put a stone on and went to town to buy a new outfit as it was my cusins 40th.I found a black sparkly cat suit in tammy girl which was age 9.That night at the party I met a great guy who is now my husband and carer.We was together 3 months when I lost my sight through retinopathy,I had 52 sessions off laser treatment to close the blood vessels which lasted 20 to 25min on each eye.It was very painful.I had the operation and I am lucky as they saved my left eye.My right eye was too bad but they still operated on it.After my eye's were ok everything else started to happen,I don't want to bore you so I will list everything I have through being diabulimic.I have nueropathy from head to toe,My feet our numb,I have Autonomic nueropathy which as attacked my bladder(I self cathetorise),bowel,Intestines and stomach.I had a stilborn son at 34 weeks but not through diabetes as I also suffer with blood clots.I then had twin boy's who are perfect and they turned 12 in feb.During my pregnancy I had a very nasty double nuemonia but babies were fine even though I was in intensive care.My kidney's failed the day I had them but I had many kidney infections and a abscess that had to be drained by a big needle through my back.When my boy's turned 1 I started dialysis at home.I got a infection in my line and I ended up on heamo dialysis which I felt a lot better on this.I went to stand up on day and fell I could not make my left side of my body work,I thought I was having a stroke but then I realised my face stayed the same.I went to A7E and no one knew what was going on with me.They took me to the medical assesment unit were I spotted my specialist registra who knew what was wrong with me.This happened before I started dialysis.My potasium level was 8.5 so I was took to intensive care and they put me on insulin and calcium to fetch it down plus they put me on heamo dialysis for the first time in my groin.I was hooked up to all the heart monitors and I had a tube stitched into my wrist were they take your gasses from.I was told that if I had a heart attack they might not be able to fetch me back from it.So I was praying that I did not have a heart attack.In 2008 I had a kidney and pancreas transplant and I was in theatre for 11 hours.2 hours later I was being rushed back to theatre and all I remember is taking my mask off and seeing everyone in scrubs I looked at my surgeon and said I am sorry if I have sweared or done anything just please look after me.I wokeup in intensive care and my husband and parents told me that they had to take the pancreas out due to a blood clot that was big inside it.I had another pancreas transplant in 2009 that took straight away and I was home 6 day's after with tubes in.I have always took pictures of everything I have been through as my daughter was diagnosed with diabetes 2 weeks before her 4th bday.I had my old kidneys taken out as I got a infection that would not go away.I asked if I could have them but they said they was so shrivveled and full of scars that they had to bin them.My stomach and intestines have made me bloated,painful and I eat blended food.Last June my pancreas failed so I am back on my insulin pump,Plus I have just found out that I have coronary heart disease which is down to the weight I put on as it took 18 months to realise that my Autonomic neuropathy has attacked all my organs and muscles.I use a wheelchair due to my muscles wasting away and I am having tests as I have short term memory loss.My spine is not straight any more due to the muscles in my back.I have been very lucky as I could have died 9 times during my diabulimia day's,keton asidosis.I also have lung disease but that is getting better.With not being diabetic for 5 years my nerves grew back in my eye's and I can see a lottle out of my right eye.I would love to share my picture but I do not know if I can on here.If I save one person with what I have been through it will mean a lot to me.My daughter started being diabulimic 2 years ago and I always made sure she came to see me in hospital to show her what can happen.She is on the mend thank god.If you would like to ask me anything please do not hesitate to ask.I am off to bed but I will check 2moz.I have missed stuff out but I hope this is enough.Diabulimia was on tele,documentory about it and showing a girl who lost her site.
 
Hello @SugarLips66

Welcome to the forum and thank you for sharing this, what a powerful read, I hope as you do that anyone suffering can see it for what it is and make a call for help, my incentive with my management has always been preserving my sight so I can watch my daughter grow up. Having a goal or focus relating to your well being is a good incentive. It is an awful situation to be in but help is there, wishing you and your family well.
 
@SugarLips66 thank you so much for sharing your story, it is very brave of you to open up like that and I hope you don't find this offensive but that is exactly why I am campaigning to get the guidelines changed so people don't have to get to that stage! You are a prime example of how people are left with not much help and this is the harsh reality of what happens! I'm so greatful for your post! If OK with you I'd like to take a copy and add it to the collection I have at the moment that will be being passed on to the mp in relation to trying to get more awareness and people in government bodies and health professionals to take seriously, I'm glad you're daughter is on the mend ☺, you should be proud of yourself Aswell that you are still here to tell us! And I think people who will read your post will definitely get help from it thank you! You are obviously a very strong woman x
 
Hi @sarahpench
fab news on joining Dwed- I am sure you will make a big difference !!
 
@SugarLips66 thank you for sharing, you are very brave and strong. I have one question, how long did you experience diabulimia, I have had it for 4 years now and am worried that it's ruined me forever, I worry that I may not be able to fix any of the creeping complications, or that I will suffer something a couple of years down the line
 
Hi guys!
So glad there id a name for it! Suffered this all through school went from a slightly overweight child to an underweight girl whose hips jutted out. Id say it never goes away truly you just learn to deal with it. Thanks to this i have retinopathy, completely lost sight in one eye, also have neuropathy a very heavy price to pay!
 
Hi Sarah
After being diagnosed in November I'v only just found out that what I have has a name! Not to sure what to do.
X
 
So glad to see a dedicated section of the forum for this! I just want to say I'm so sorry about how many people are suffering with this, and to add to the number of people who are fighting it alongside you.

I was diagnosed type one aged 12, and am now 27. Suffered with diabulimia from pretty early on but wasn't really aware of it, just thought I was a bad person who couldn't do what she knew she had to. It was probaby about 12 years before I even heard the term diabulimia and learned that it wasn't just me. Jacqueline Allen and DWED are fantastic and the work they do sounds challenging, and it's great to see you've started there too Sarah

What I find frustrating, is that when I learned that it was essentially an eating disorder, I spent months trying to build up the courage to tell my doctor or nurse. When I finally did it, they were absolutely useless. They had no idea how to help, and although they offered to recommend psychological help, they couldn't refer me for it themselves so a recommendation was sent through to my GP, who then sent it to the local mental health services and they wouldn't see me because I'd already had therapy in the past (unrelated) and they didn't have the funding for me. A big part of this, is because most of the mental health services people are not knowledgeable about diabetes and do not understand how dangerous it is. So the diabetes team didn't do the psychological support and the psychological team didn't understand the diabetes part (luckily they're making progress here now). Anyway, I fought and fought (with the help of my family, thank god) and finally got therapy. I've had a few different types and only just found one that's working for me (It's only been a few weeks that I've been doing well but keeping my fingers crossed that I can keep it up), but in the meantime the last diabetes consultant I saw literally said "well it looks like there's nothing we can do to help so should we just discharge you?" (bearing in mind I've had a HbA1c of over 10 consistently for around 13 years and now have maculopathy). The only thing the diabetes team ever did in terms of trying to 'help' me with the eating problems was to constantly remind me of how I would die or go blind or lose limbs if I carried on doing what I was doing. And that fear was exactly the reason I had the eating disorder in the first place (that and my fear of hypos), misuse of my insulin was the only way I ever felt in control. When I try to do things properly, I never know what's going on, I go from low to high and back again like a yoyo and feel helpless and like nothing I do makes a difference. What I was doing with my insulin might sound stupid (and was definitely illogical) but at least I KNEW I wouldn't go low. It was the only time I could guarantee it.

Anyway the three key things I have learned over the years are:
1. Fear doesn't work. I thought the beginnings of background retinopathy would surely be the kick I needed to sort my life out. It wasn't. I needed help, and the fact that I wasn't getting it did not mean it was my fault I wasn't managing better.
2. For me, I HAVE to be on a reasonably low carb diet for the recovery to work. Trying to 'limit', 'cut down' or 'eat in moderation' did not work for me- eating sugary food made me feel high (good high not hyper) and settled my anxiety. If I had a tiny amount I couldn't stop. After the worst part (the first week) of cutting out sugar completely the compulsion to eat almost disappeared. I do crave sugar if I eat a carby meal, but it's much more manageable. But low carb avoids that trigger.
3. You have to persevere to get the therapy you need, and if/when you do, be prepared for it to not be a quick fix. I spent a long time desperately trying to reach the end goal (i.e. managing my condition) and getting frustrated that it was taking so long. In the end, thinking more about who I wanted to be rather than who I thought I was or what I wanted to achieve was much more effective. (For me, hypnotherapy and acceptance and commitment therapy have been the successful types).

Love to all <3

Keep fighting and never be afraid to have a good cry/rant! xXx
 
Last edited by a moderator:
KellyMarie86 said:
Hi Sarah
After being diagnosed in November I'v only just found out that what I have has a name! Not to sure what to do.
X
Click to expand...
Hi @KellyMarie86
welcome to the forum.
noticed you posted a few hours ago and not had any response from peeps that can help directly.
I just want to say to you how brave you are for posting and am tagging @sarahpench , she should be along soon.
and sending you a hug too [hug]
 
what a wonderful and hugely supportive post @lilyfleur -- I am so pleased you are finally getting some help
D on its own is hard but adding an eating disorder must make things so hard for you -- i genuinely wish you all the best and hope you continue to improve with your new choices !
i will be rooting for you .

paul ( himtoo )
 

Hi guys,
I saw an article posted about diabulimia and couldn't believe what I was reading! To think that this is such a large problem and no-one has really heard of it in the medical professions that deal with diabetics. I never thought about what I had been going through until I saw the article and now I finally have an answer to it all.
I am a type one diabetic and have been diagnosed since 2006. At first I was getting used to having to inject insulin but time passed and i moved to a new area and a new school. At this point I was bullied about everything, including my diabetes of all things! I was called fat, special needs, useless, and diseased among many other things. So, depression and anxiety of course took hold. Unfortunately this depression and anxiety only got worse as my time at secondary school progressed and as time went on my HBA1C levels sky rocketed. The cause? I started missing my injections. I became very insecure about my looks, my weight, my general existence. I began with skipping out on injections that I had to do away from home, to try and fit in more with everyone at school and seem less 'weird' and become less of a target to the bullies. This unfortunately didn't help. I then became more anxious and depressed and turned to self harm to cope with my new found self hatred. This also led to me skipping out on my injections entirely, as I felt like I couldn't be diabetic or I would continuously be bullied for the rest of my life. I then managed to get to the end of secondary school, my GCSE years and I ended up being moved onto the insulin pump. However, this didn't last long as my body unfortunately rejected it after about a year and a half and with my HBA1C levels not improving drastically while being on it I was moved back onto injections. These lasted about a month, until I had a massive relapse with my mental health issues. I stopped taking my insulin and lived off of a packet of crisps a day at best.
I moved on to college but the bullying had takrn it's toll. I was still severely depressed and not doing my injections. This continued for about a year until I tried to pull myself back together again after being hospitalised with ketoacidisis (if that's how you spell it :S) and began a very slow process of starting to inject myself again. However, with the thought of university lingering over me and the stress of my course I fell back into bad habits and ended up starving myself again and ultimately stopped doing my injections again. I don't know how much weight I lost, but I know that my parents and my friends were concerned before I left for uni about my weight and general diabetes control, especially sincde I always avoid the topic as it sets of my anxiety and I begin to shut down.
I had my boyfriend help me move up to bristol (from plymouth) for university. With my HBA1C at an all time high along with my depression and anxiety I only lasted a week away before I had to be retrieved as I had reached the point that I wanted to end it all. I had major self harm relapses and wasn't doing my injections, mostly only using my needles in the process of self harm among other items. Again still starving myself I returned to live back at home and was told by everyone around me that I had become gaunt and too skinny, but again didn't want to weigh myself as I didn't believe them. I still thought that I needed to lose weight. However, I became polar opposite, apparently using my lack of injecting as a self harm tactic as I didn't feel like I was good enough anymore. I ate like someone with a major sweet tooth, stuffing all of the chocolate and high carb foods into my face as much as possible. With having a really bad HBA1C still, I felt awful but remembered that the last time I tried to inject again I still felt just as bad. I have always had joint and muscle issues, even before being diagnosed diabetic but has always been put down to either growing pains or poor diabetes control. This carried on for two years, and only now (for about the past week) have I decided to try again at controlling my diabetes by getting help from my boyfriend in reminding me to inject as my half sister (who is also diabetic) had complications with her diabetes and was hospitalised which caused my mum to break down completely.
I feel that the issue needs to be addressed as I have seen first hand the dangers of poor diabetes control and what diabulimia can do (now I finally have a term for it!) as I have poor eyesight that has gotten worse and my half sister has had a stroke among other complications to do with her diabetes. Again, linked with other health issues such as depression, anxiety, self-harm, and physiological issues it can be an absolute silent killer and it is such a shame to know that people go through this without any help
I am so glad that this forum has been set up for people to share their experiences, and I am so grateful that I can post this here to hopefully get the support I need and to help others get the support they need to. So thank you, and sorry for the essay! Xxx
 
KellyMarie86 said:
Hi Sarah
After being diagnosed in November I'v only just found out that what I have has a name! Not to sure what to do.
X
Click to expand...
Morning @KellyMarie86 Welcome to the forum. I cannot offer specific advice, but as you have opened up to us and understand what it is that you have, would suggest that you contact your Diabetic Nurse tomorrow, I cannot say how useful their help will be but as a starting point it would help you to chat through it with someone in your healthcare team. Putting your health first is a priority and sites like DWED are a useful resource, but support is what you need to start looking at a way to recover and get the help that you need. I suggest if your healthcare teams response is negative or doesn't understand then point them in the direction of the DWED site as a reference and see if you can get access to counselling. As a fairly new type 1 you need as much support as you can get right now so please let us know how you get on
 
@Psychonumber13

Thank you for having courage and posting here, it's stories like this that we need to hear, it's an isolating condition, and with no real recognition from healthcare professionals, with more support it will get recognition as it is a real problem and support is vital.
 
Thanks guys, still trying to figure out how to use the forum, doesn't seem to work in my app. Thanks for all your support, as much as a large part of me doesn't want to I will call my team tomorrow and see if I can see someone. After reading lots of your stories it has scared me as I didn't think the condition existed, thought it was just me. Had a wake up call I needed but know I need help with the real issue. Big hugs to all. Xx
 
I also did not know that this had a name. I suffered from diagnosis aged 19, intermittently until I was pregnant with my first child aged 28. Initially after diagnosis my control was terrible and I lost 3 stones in a few months. That is what made me do it again and again as when I tried to become healthier and gain better control, I would put weight on and feel unhappy.
I work as a healthcare professional and had full knowledge of what I was potentially doing to my body. When I went to check ups I would 'forget' my diary and try really hard for the month or two before so that my A1c was a little better. I would lie and say I'd lost weight at weight watchers and was never once challenged. In fact I used to get a pat on the back. I have never told them the truth.
Thankfully I now have good control, a healthy diet and I exercise a lot. Touch wood I have no complications apart from some early retinopathy changes. Having a family helped me to realise that having a mum around and healthy (but a little overweight) is better than no mum at all.
I have recently started to take Metformin as well as insulin and I'm crossing my fingers that this will help me lose a little weight. I'll keep you posted!
 
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