auto immune diseases and my life

kerrie03

Member
Messages
5
Hi,
My head just seems so full that I can't get my mind around anything. I'm hoping if I tell my story to someone ho doesn't know me it could help?!
I've just turned 38 and have recently been diagnosed with diabetes and I'm just trying to get my head around everything.
I have crohne's disease which I've been diagnosed with for 20 years now After lots visits to GP and being told for years that my problems with my tummy were nerves about GCSEs then A levels I eventually ended up in hospital with an abcess that was just about to burst and had to be operated on immediately. I was in hosp for approx 3 weeks and had surgery a further 5 times for 5 more abcess's. I was seen by a surgical and medical team and after trying lots of things including steroids (which I have had on and off for years) elemental diet for 15 weeks it was decided that I had to have an ileostom-at 20 which I've had for 17 years.
Right now I have oral crohne's (which is unusual-which seems to be my theme!) as well as further down my bowel. M inflamatory markers were in the 150's and should be 60, I have an MRI booked for next week and my consultant was takng my case to a multi discipline meeting to try to work out what next I take 3 immuno suppresants including adalimumab which I self inject every 2 weeks. Crohne's is caused when your immune system turns against and attack the body-in the case of crohnes anywhere on the digestive tract from mouth to the other end.
OK, so I had crohne's and had a major op-which did leave me feeling a lot better. I was told pregnancy probably wouldn't happen (because of scar tissue and the fact that I wasn't diagnosed for 6 years) and if it did happen it would take a long time. MY dad died very suddenly at 47 from a massive heart attack and I forgot my contraception-4 weeks after the funeral I found out I was regnant-with identical twins! They were born 8 weeks early and we nearly lost the oldest (I was 3 days in labour and it got complicated-I eventually asked for a C section), but they are healthy and nearly 16.
I was told that falling pregnant so easily as a fluke and if I wanted another baby to try to have it before 25-but again was told that it was unlikely. Again after 1 month of no contracteption I was pregnant-even though my husband was only home 2 days a week!
I had my little boy 14 years this summer and lost my half brother. I noticed that winter that when I was putting the shopping in the freezer it was hurting the joints on my fingers. I mentioned this to my GP (a different practice to that which I had when I was younger) and she said because it was me she would do a blood test. Lo and behold-it came back with a really high positive rhumetoid factor. I was sent to the same hospital i go to for my crohne's to see a consultant. A year later I needed a walking stick which I still use.. About this time my marriage ended and I moved out with the kids who were 3 and 5 at the time. Although I have had a long term relationship since then I am the only adult in the house with 3 teenagers. I am lucky in that although this long term relationship ended we are still on good terms and see each other regularly and he makes sure he see's the chilldren too.My twin girls will not go to see their dad so I'm pleased that they have got a positive male role model.
I saw a different consultant who further diagnsed my with fibromyalgia and ankylosing spondilitis. I lost my job 5 years ago due to being ill.-These are all auto immune conditions too.
I now have a wheelchair that I've hand for a while but this week has been the first time I've really had no choice but to use it extensively all week-even in the house. My son has a GCSE options open evening at school next week and hes asked me not to go in the electric wheelchair.
I saw my GP a couple of years ago complaining of excessive thirst, going to the loo a lot and being really tired I asked him if I cold be diabetic-he said no and didn't do a blood test. Then, during the autumn last year I got one kidney infection after another-I had 6 in a row. A couple of different GP's checked my wee and said there was sugar in and arranged a blood test. The test came back with a reading of 10. I was told I was diabetic but it was going to be treated by diet-then given no advice, help or support on how to do this.
The same GP also made an appointment at the hospital for an investigation to be made into bladder and kidneys to make sure nothing else was going on. The ultrasound and x ray came back fine and I was asked to go into hospital to have a general anasthetic to have a camera look at my bladder. When I went in at 7 in the morning my finger was pricked and blood tested-it came up at 13. Having not had this done before and not checking my own levels I didn't know if this was normal for me but the nurse was worried. I was tested again in recovery-again 13. Then after going back to the ward and having a cup of tea and slice of toast they were checked again-it had risen to 21! a doctor was called and I was asked to stay a further 2 hours for another reading. I did and it was 19. The doctor let me go home asking me to get in touch with my GP the following week. I rang up on the Tuesday and a GP rang me back (a new system at my dr's), I explained the story and she asked me to go straight in. I was seen and she pricked my finger and I had a reading of 18. She rang and spoke to a diabetic registrar and I was asked to go straight to the hospital. After lots of waiting and a couple of blood tests I saw the registrar my GP had spoken too. She said with my reading being so high and my crohnes flaring I needed insulin. She said she would let me home and make an appointment at the diabetic center for me. She explained there was no use giving me insulin then and there as I needed to be shown everything by a specialist nurse. The appointment came through for the following Monday-the 11th. I went and everyone from the receptionist to the prof were lovely and I was started on insulin. My nurse rang my every couple of days until last Friday when she went on holiday. I was told to increase to 62 before breakfast and 44 before tea an I spoke to a different nurse on Monday who asked me to go through my readings then said to carry on and I would not e speaking to anyone until next week. I asked if I should stay on the same and what to do if my reading went back up (they have been as high as 31.4 and as low as 8! But are more often between 13-21), she said to just stay on the same and speak to my nurse who will have come back from holiday on Monday.
So, I'm not sleeping because everything is just spinning through my head. It looks like my immune system is just going through different organs and turning on them, and I was wondering if I had LADA-which would fit with everything else? I do have a high BMI but it's more to do with the fact that I am so not able to do the amount of activity I used to do-even the amount of waking I used to do at work from the office to look for people etc rather than what I eat. I've been keeping a food diary and I really don't understand how my reading are so high. I eat low to lowish carb anyhow and don't eat any cake/sweet stuff to push them up. I know my morphine medicine has corn syrup in it but I don't have that all of the time and it;s a spoonfull at a time.
My mum comes once a week to help tidy and the kids help as well-but no more than they would if I wasn't poorly. Other than that, the kids and my ex popping round which is more for the kids benefit I am alone. I keep in touch with family on facebook and have a couple of friends who are not totally bored of everything who I still see a couple of times a year but other than that I am alone. I miss having the comradery of people at the office and hearing what is going on in other people's lives. I kept working as long as I could-it helped with the pain and gave me a sense of self worth. Now I'm an overweight medical complicaton and someone my son does't want to be seen with i the wheelchair-which I have really really resisted using but now there is no other option and I feel useless-I can't even get up the stairs to the kids bedrooms-I had to have a bedroom and en suite built downstairs-luckily this was done before I lost my job.
Well, if you've read this far you deserve a medal. It has made things a little clearer-but it seems like bed time is the time I get upset about everything and need to talk to someone about it. The kids are too young and I wouldn't go there anyhow, my mum has a heart problem and my sister and the friends I do have have their own families and lives and don't need to be bothered. A couple of year ago I had what I thought was a really good friend, we had been friends for some time (she was even god mother to 2 of the kids) and she encouraged me to talk to her and email or text her when stuff was going round my head-she did the same to me but after a few weeks she told me it was too much and she didn't want to be friends or speak to me again. Now I find it best to not share which is probably part of the reason this all got so big!
Thank you
 
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WhitbyJet

Well-Known Member
Messages
1,597
Oh Kerrie, your story touched my heart, rest assured I didnt read it just once, but a few times to take it all in, so much suffering there, yet despite everything you come out so strong throught it all.

I dont really know what to tell you in regards to your health issues, but I didnt wnat your post to go unanswered, so I am sending you a giant, great big hug, love and light, I have also sent a PM with my email address, you would need to make another 3 posts before you can access PM.

Lots of love, light and hugs for you x x
 

kerrie03

Member
Messages
5
Thank you so much WhitbyJet-the hug was really needed. I'll send a couple of post and I'll PM you. Thank you once again xx
 

MCMLXXIII

Well-Known Member
Messages
1,823
Type of diabetes
Type 2
Treatment type
Diet only
Whenever i get low i go to the sea.
Or a glen in Scotland, its got me through the shock of diagnosis as i naively thought i was invincible.
Which clearly I wasn't.
I wish you every success and best wishes i can and hope things get better for you.

Sent from my KFTT using DCUK Forum mobile app
 

darcy5211

Member
Messages
7
Oh my darling, I have read your post but cant reply properly at moment, need to go out (hard work), but have so much to say. I am in similar position and will email you later.
Regards
Christine x :D
 
L

Luna21

Guest
Kerrie, you really have been through the mill lately.
It's like it's one thing after another and I know a little of how that feels, although I wouldn't compare my conditions to yours in any way.

I'll make this short. After a long time of aches and pain, horrific psoriasis, which I had been suffering from for years, then swelling of various parts of my body, fatigue, etc etc, I was eventually diagnosed with psoriatic arthritis which is an autoimmune arthritis.

Not long after that, I was diagnosed with high BP and high cholesterol. Then, I developed hypothyroidism, and now within months I have been diagnosed as a diabetic type 2.

I also have the problem of fatty liver (associated with many psoriasis patients) and very high liver enzymes, due in part to a drug called methotrexate (essentially a smaller dose of a chemotherapy drug) which I have to take to control my psoriatic arthritis.
At the moment, it's a juggling act to try and take all the medications I require, without causing liver damage. I dread to think what's going to happen if/when I have to take metformin. :shock:

This has all happened in a pretty short time, so to me, it all seems related. I think that once our bodies develop one auto-immune disease, it seems more likely to develop another, although I wouldn't proffer to be an expert. The coincidences are just too great otherwise.
Autoimmune disease means we have unfortunately an overactive immune response which means that our bodies are essentially fighting our own cells and tissues, so it's not difficult to make assumptions that once it starts with one thing, it moves onto others.

I too already eat a well-balanced diet but due to ongoing mobility problems cannot exercise as much as I would wish, and for the moment I am following a low carb diet in the hope that I will not have to use metformin or insulin at a later date. I have no idea if it's working or not, and the vague instructions you get from the diabetes nurse, and the insinuation that it's 'all my own fault' really gets me angry.

I can totally understand the feeling of needing some compassion and understanding in both how you are feeling, and how you can deal with everything that is happening to you.
My family are supportive, and have listened and read all the literature, but there is only so much they can listen to, before you can see their brain shutting down and the TV in the corner beckoning to them! :wink: I'm lucky in that I have a friend who I can bounce ideas off, and who is always there for me.

I find it all hard to accept as 3 years ago, I was as fit as a fiddle and held down a full-time, very strenuous job, walked miles and had no health issues. No doubt, I will have to learn to accept even more changes, difficult as they are, and try and make the best of things, although in no way are my circumstances anywhere near as difficult as yours.

It's really hard to be able to think of anything else, when your whole life revolves around pain, medication, diet, carbs, etc, etc and worry for the future, so I hope you can get the support you need here or elsewhere. A 'real' friend would not let you down when you really need them, so I can only offer my sympathy, and understanding.
 

dowuchyalike

Well-Known Member
Messages
53
Hi Kerrie

Forgive me if this is something you've already considered/looked into, but there is a school of thought that considers food sensitivities/intolerances to be the trigger for auto-immune conditions. I recently read Barbara Allen's 'Conquering Arthritis' and though it's chief focus is the alleviation of that particular condition, it does clearly state that the same regimen can be applied to other auto-immune diseases.
 
L

Luna21

Guest
Very interesting, but there are lots of ideas about what might be the trigger for autoimmune arthritis; from terrible sleep patterns to streptococcus infections, which in my case I might agree with, to illness, being generally run down,depression and bereavement.

However, none of this is proven as yet, and yes, certainly, some arthritis sufferers do find that a healthy diet does help their symptoms, but there is no cure for arthritis, and in fact, for anyone to cease medication for diet alone, would put them at great risk of amongst other things, bone deformity. I know that's not what you are advocating of course.

It's true that some sufferers find they are better without or with certain things in their diet, but even diet supplements from health shops can be dangerous to some on specific medication, so no-one should change their medication or add 'natural remedies' to it before getting advice from their doctor. It's an easy option to say, eat this or that, and all will be well, but I'm afraid that it remains to be proven.

We all hope there will be a treatment or drug one day to cure inflammatory arthritis, as we hope there will be one for diabetes too, but until then it then we just have to look after ourselves as best we can.
 

dowuchyalike

Well-Known Member
Messages
53
Luna21 said:
However, none of this is proven as yet, and yes, certainly, some arthritis sufferers do find that a healthy diet does help their symptoms, but there is no cure for arthritis, and in fact, for anyone to cease medication for diet alone, would put them at great risk of amongst other things, bone deformity. I know that's not what you are advocating of course.

Maybe not proven in clinical trials, but since 'Big Pharma' can't patent most food (although Monsanto's managed it with some GM crops) there's little money to be made out of dietary programmes (other than from books that provide information about them), so there never will be any such trials conducted.

I suggested the dietary approach because if you're someone who's entirely desperate you basically have nothing to lose by giving it a try. Research things like the GAPS diet and you'll find a wealth of evidence - albeit anecdotal only - of people who have found relief from chronic conditions through dietary intervention.

"Let food be thy medicine and medicine be thy food", as Hippocrates said.
 
Messages
18,448
Type of diabetes
Type 1
Treatment type
Insulin
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Hi Kerrie

Your post is truly heartbreaking, even though I know you haven't posted just to get sympathy or to moan about your life.

I can't add anything to what others have written, but I send you all my best wishes, with hope for a positive and bright future.

RRB X
 

librarising

Well-Known Member
Messages
1,116
Type of diabetes
LADA
Treatment type
Insulin
Hi Kerrie

I haven't posted here for some time, but was checking recent posts, when I saw yours.
It's truly a sad story, and I'm posting in case anything I have to say helps.

I have a good friend who suspected he had AS (ankylosing sponylitis), so I did some googling on his behalf, and discovered that there was a London hospital who used a low starch diet in their treatment of this condition.
Whilst his brother definitely has AS, he does not, but I passed on the information in case it helped his brother.

I've just googled some links for you, so you can see that what I'm saying is kosher, NHS-related, and not just some theoretical quackery. Intriguingly, the first link talks about both AS and CD (Crohn's Disease)


http://www.discoverymedicine.com/Taha-R ... treatment/

"One of the main candidates for this new therapeutic protocol is the use of a low starch diet."

"In the AS patients attending the “London AS Clinic” at the Middlesex Hospital for the past 20 years, it has been found that normally it takes around 6-8 months for the diet to show its effects, and that the majority of AS patients could be treated with dietary manipulation and exercises without the requirements for supplementary pharmaceutical treatments (Ebringer and Wilson, 1996)."

"Based on these data results it is suggested that a low starch diet intake could help in the eradication of Klebsiella and other related enterobacterial species from the bowel and might lead to a decrease in the activity, progress, and full development of AS, CD, and possibly other disease entities of SpAs."

"We suggest that, together with the currently used treatments, inclusion of a low starch dietary intake in patients with AS and/or CD could be beneficial."


In a much more readable (yet reduced)article, I found the same treatment referred to on an AS support site :

http://www.kickas.org/londondiet.shtml

And a third link for you (be warned - some here will try to discredit Barry Groves, but remember - I'm not using him as my authority. He's just passing on information, not proposing a theory) :

http://www.second-opinions.co.uk/ank-sp ... TT-sDCeOJu

I was intrigued by a comment that follows the article :

"Anyone with AS should take this diet very seriously . I am a 57 year old man who has had this disease since I was 22 .A year ago I was taking 8. 500/30 cocodomol daily , a fortnightly injection of anti TNF and various other medications . I read about the London diet , low starch , I started it in Feb 2012 , I lost 3 stone over the next few months , but more importantly after thirty years of suffering I am pain free and medication free . I did make a few other modifications like only eating natural unprocessed foods , but basically I believe starch is the problem as it feeds the klebsiella ."

As an added benefit, some diabetics find that a low starch diet helps them to control their blood sugar levels.

Wishing you relief in your search for what will work for you

Geoff