# Crohnies with Diabetes Support Group



## lizbeth

Hi everyone,
Just wondered if anyone out there living with both conditions would like a support group where we could share our stories? Where we could rejoice in our successes and empathize on our negatives......This is my story....

1996 Insulin dependant diabetes diagnosed, my children were only little so I thought I need to look after myself so that I can be around for them.  I did really well the first couple of years then it went pear shaped and no matter what I did my HbA1c was never below 9!! ...

1999 Started to experience extreme hip pain, then my SI joint got sore, I plagued my Dr until I paid for a private rheumatology appt, got physio and it improved  ....

2009 Lost my amazing mum very suddenly to cancer 2 days after my fortieth birthday  

2010 experiencing left shoulder and right wrist pain, had surgery on both 4 months apart, the wrist was first. Took much longer to heal than expected and lost my job as a result  ....

2011 now having lots of joint pains kept asking my gp if they were related but he kept saying no.  My diabetes was taking a bit of abuse so was having lots of highs and lows.  Was still doing daily physio for shoulder, wrist and then left Achilles where I discovered a lump, turns out I have a lypoma wrapped around my Achilles. I was beginning to get embarrassed every time I turned to for physio cos it was my gps answer for everything! Lol......

2012 Starting to think I'm in a body of a 90 year old!!  Most of me hurts.  Then I discover a book called think like a pancreas, it was amazing, really helped and I got my HbA1c down to 8 for the first time in years, the result prior to that had been over 10 so I was overjoyed ) I lost weight and was exercising and thought I was getting control of my life back, even started looking for a new job......Then in Nov I pulled a muscle in my abdomen, or so I thought.  Had to go to hospital when it got unbearable, was kept in for 2 weeks and that's when crohns joined my life. One week before Christmas I had my first laser treatment for diabetic maculopathy.

2013 since then I have found life to be really difficult, I have been diagnosed with OA in my lumbar spine with protrusion of 2 discs, also OA in my right hand (which consultant says will never get better after the surgery).  I've had more laser treatment.  My diabetes and crohns don't like each other lol, I'm still having tests now checking for strictures then hopefully decide a plan for meds.  Until then my diabetes is on the back boiler but as long as I keep doing what I'm doing my Dr is happy  

My daughter suggested I joined a forum to get some support and she found this one for me, it was one of the best gifts she gave me.  I would love to here from anyone living with IBD and Diabetes, please come and share your stories.


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## carolhew

Hi Lizbeth and welcome to the forum!

I was diagnosed with type 2 Diabetes in my early thirties but did not use any medication until my early forties. I was just shy of my 47th birthday when I was diagnosed with Crohn's. The two diseases have not mixed well for me. Prednisone was a nightmare for my bg levels and veggies,fruit and fiber irritate the Crohn's. I just started taking Humira weekly and that has greatly helped with the Crohn's induce arthritis and urgent trips to the bathroom! I am still working on getting better control of the diabetes and just started insulin (Lantus).

I am still struggling with the fact that I have these diseases. This forum has been a Godsend for me!

Carol


Currently taking Humira 40 mg weekly and Azathioprine 150mg daily. 

Crohn's Dx June 2011, primarily in the TI some in the colon.

Past meds: Entocort, prednisone and Pentasa.


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## lizbeth

Hi Carol and thank you for posting  

I really think these 2conditions together are a bit of a curse, everyday is like a balancing act and I keep dropping the balls! Lol. I was doing okay with the diabetes but now having crohns I'm finding it a real challenge.  I'm having a bad day today, my abdomen is be sore and my joints are shouting at me too, I take pain relief everyday and wish it wasn't required.

How do you find the azathioprine, did you have any problems starting it? Think that's what my GI is planning next, my gp reckons it would be better than pred. 

It's difficult to control the bg when diet is such a big part of it.  Good luck working on yours will be thinking about you.:thumright:


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## carolhew

Lizbeth, I have not had any problems with Azathioprine or the Humira. Actually I am feeling much better, but with that comes eating more and now the problems with the diabetes.

I agree these two diseases are a real challenge together!

Hang in there!


Currently taking Humira 40 mg weekly and Azathioprine 150mg daily. 

Crohn's Dx June 2011, primarily in the TI some in the colon.

Past meds: Entocort, prednisone and Pentasa.


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## calcat54

Hello ladies, my name is Cathy and I also gave been dealing with this lovely pair of diseases. I have had Crohn's sibce 1989, which us when I had my girst resection. Found out I had tyoe 2 diabetes in 2007, after having a stroke. Glucose level was 1100. Since that day I understood why my life had become a living hell. My Gadtro doc told me I couldn't gave found a worst combination of diseases if I tried. I am so sorry you all are having to deal with this, but have to admit I am happy to know I'm not alone.


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## lizbeth

Hi there Happy Easter everyone 

Thanks for joining us Cathy, I agree that it's really good to know you're not on your own, although I wouldn't wish these 2 lovely diseases on anyone.  It seems like life has thrown you some hard knocks too.  

Do any of you wonder why we experience lots of health problems?  I never actually ask myself "why me" cos the answer to that would be "why NOT me", but I do sometimes ponder the reasoning behind it all.  

I'm really bad.....my husband asked me if I wanted an Easter egg and I said of course! Couldn't believe he asked.  Normally I try to avoid sweets etc but Easter just isn't the same without an egg   Do you allow yourselves treats or are you very strict with what you eat?

Have a great Easter


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## carolhew

Cathy, 
You have been through the ringer with these two diseases! I agree with your GI! What a horrible combination of diseases!

I am so great for this forum and especially this thread right now. I have recently gained some weight back and now my bg levels are out of control. I am taking Victoza, glumetza and Lantus. I struggle with what to eat. If I eat to keep my gut calm my bg levels rise and if I eat low carb high fiber my gut pays. 

I would love to hear how you and Lizbeth try to balance eating.


Currently taking Humira 40 mg weekly and Azathioprine 150mg daily. 

Crohn's Dx June 2011, primarily in the TI some in the colon.

Past meds: Entocort, prednisone and Pentasa.


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## lizbeth

Hi Carolhew

I'm just like you, having the same diet issues, I have put a lot of weight back on after 10 weeks of steroids.  When my weight goes up so does my BGs.  For now I'm focusing on controlling my tum and less thought on the diabetes, I'm very lucky that a Dr at my diabetic clinic also works for the IBD clinic and he is very encouraging.  He said not to worry too much about BG control until we get my Crohns symptoms sorted out, him telling me that has really helped cos I was really panicking about elevated BGs.  

Diet wise at the minute I try to follow a regime that manages strictures, a very low residue diet.  This has helped the tummy pain I think?  It's not a very satisfying diet cos I feel hungry more often, but if it reduces pain then I will continue for now.  Try talking to a dietitian, they should be able to help you work out a plan with you diet , maybe your diabetic meds need to be adjusted too so try and talk with your specialist?  It's a balancing act and it's difficult. I tend to eat less carbs now and more protein, I think this has helped with the BGs.  

Keep a food dairy, it's good for both the tummy and the diabetes, also keep note of how your feeling each day, I keep a journal where I record my BG, how much insulin I took, how much carbs I ate and make note of pain levels, activity and general observations of each day.  I take it along to appointments and then my medical team can look back and use the info to make alterations to meds etc.  Good luck hope this helps.


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## calcat54

Happy Easter ladies!

Thank you for your replies. Your words of encouragement really do help.
Carolhew, I only take insulin for my Diabetes. Both Novolog and Lantus. I have kidney disease so they have taken me off all oral meds. For my Crohns, I take Azathioprine, and now with the ileostomy they have added Loperamude and Opium. I took both Cimzia and Remicade and neither worked for me. Doc said no sense in trying Humira.

Lizbeth, I too try to limit carbs and eat a lot of protiens. This gets tricky for me because with bad kudneys, to much protien can be harmful. I have talked to several dietians and have come to the conclusion that they have no better idea of a diet to manage these two nasty diseases than we do. It is just a guessing game, ay least for me, because one time I can eat something and be just fine, and the next time I eat it I pay.

I'm happy keeping a food diary works for you. It doesn't for me. It makes me feel like the diseases are controling my life and I just refuse to let that happen. Believe me, we have battles, but it just doesn't work for me.

I look forward to getting to know you all and am so happy to have found this group. Enjoy your holiday.


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## lizbeth

Hello happy April fools, I hope no-one played a trick on you today  How is everyone today?

I understand what you mean about the diary, I felt like you did about it,it was like there was nothing to me except my diabetes and that it controlled all aspects of my life, so I stopped recording and sort of went off the rails, eating what I wanted and not thinking about it at all.  I realized recently that by keeping a journal I could control the diabetes and not let it control me!! In a strange way I now feel by recording stuff that I am setting the rules and it does help when I go for check-ups.....the diabetes team can see that I'm working at it and not give me a hard time  lol.  Plus my memory is crap and I can never remember stuff when I'm at clinics.....think i'm having senior moments :ybatty:

Take care.


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## carolhew

I have tried the diary and counting carbs in the past and I always seem to fall off the wagon. I know some of the foods that trigger my Crohn's, some don't always affect me the same way. Counting carbs really helps with the bg levels, but it only last a few months. I don't know why I fall into denial, both of my parents were diabetics and I know the long term effects. I just get so frustrated at times. I need to just keep trying!


Currently taking Humira 40 mg weekly and Azathioprine 150mg daily. 

Crohn's Dx June 2011, primarily in the TI some in the colon.

Past meds: Entocort, prednisone and Pentasa.


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## lizbeth

I know what you mean, I think it's so hard to keep up the good work, it lasts for a while and then I slip out of the habit, I was away last week aand when I should be recording everyday I didn't do it until I came home.  It's just so frustrating :ybatty: living with these 2 diseases that I long to feel normal and be spontaneous.......huh I'll never be spontaneous again!  My husband and eldest daughter are sitting with me getting stuck into massive amounts of food and I envy them, wouldn't it be lovely to just eat without all the thought that has to go into it? 

I do find too that the same foods will effect me differently at times, it makes BG control a bit tricky. :yrolleyes: 

My GP said take it one day at a time and that's all I can do.  Take care everyone.


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## calcat54

Here is what I have decided.........I am tryin to appeciate the good days. You know, where the bg is not crazy high and where the pain from the Crohns is not putting tears in my eyes and I have not spent most of the day going to or coming from the loo. These days just don't happen often enough!
Hope the day is a good one for you


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## lizbeth

Yeah it would be lovely if more of those days happened  I'm ot feeling too bad today, how are you all today?


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## calcat54

Today is give yourself a B-12 shot! Other than that it should be an okay day. Happy your day isn't too bad. Here's to good days for all ;-)


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## carolhew

Today was a good day! 


Currently taking Humira 40 mg weekly and Azathioprine 150mg daily. 

Crohn's Dx June 2011, primarily in the TI some in the colon.

Past meds: Entocort, prednisone and Pentasa.


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## ron50

Hi All,
          I was originally dxed with Ibs though they were not sure as I had been prescribed naprosyn and had been taking it for years without any safeguard (I am now taking somac every day). Unfortunately with the Ibs dx they pretty well ignored all of my symptoms and in 1998 I had emergency surgery to remove what turned out to be a stage 3c bowel cancer. I had a year of chemo,one of the drugs I was on was banned for human use a year or so after I was on it because of fatal side effects. In 2004 I was check for diabetes and although not fufilling the profile ,they told me I was insulin resistent. I suffer severe neuropathy in feet legs and hands now and I started losing protein thru my kidneys,up to 4 grams a day. I was under a nephrologist and he decided I had minimal change disease and put me on 75mg of prednisone a day for 18 mos. It made no difference to the peotein loss but it left me with type two diabetes. I have had three kidney biopsies and still can't tell me what I have. Apparently not much research has been done on long term side effects of the chemo I was on. So now I have severe neuropathy,no treatment. Type two diabetes 1000 mg of metformin daily,severe psoriatic arthritis and proteinurea 20 mg a week (actually .8 of  ml via injection) of methotrexate,vertigo and somewhere along the line I have developed an ectopic heartbeat along with congestive heartfailure and pulmonary oedeema thanks to the protein loss. I am on lasik and two bp meds for that... Life is a struggle ,I turn 63 on Sat and I suspect there may not be many more, Ron.


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## lizbeth

Thank you for sharing your story with us ron50,

Sorry doesn't seem enough to convey how I feel after reading your story, I strongly agree that life is a struggle, it appears that one trouble comes along and before we get a chance to deal with it something comes along and then more and more.  There is no rhyme nor reason and it is very difficult at times to accept.  I wish for you to have some relief from your symptoms, please take care and keep in touch. :ghug:


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## Karen

I hope that it is ok that I come into this group ... why do I ask ? :smile: because ... 1 - I am the Diabetic - TYPE 2 & my loving hubby of 35 years is the Crohnie of 7 years and counting ... so do let me know if it is ok that I am here !!! :smile:


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## lizbeth

of course welcome to the group Karen


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## jeepbeep

Hello Everyone!
I was diagnosed with Type 2 diabetes in December 2010. I was just 28  It was a sad day for me.  They put me on Metformin right away- with a warning that it can cause intestinal issues. So I didn't think  much of it and just kind of suffered until 6 months later I had lost 30lbs, was running to the bathroom over 15 times a day and noticing blood in my stool.  I also had some kind of skin infection I thought. Turns out I was presenting with Crohn's  and the skin problem was a fistula. 

Went on Metformin ER 2000mg a day and then added in 2mg Glimipiride.  Started Imuran for Crohn's.  Had relief for a couple months but then Crohn's just got worse over time. 

Diabetes is luckily VERY good right now. My last A1C was 6.3! yay!
It's the Crohn's that's being a pain in my butt right now. Literally. 
Had a colonoscopy in February 2013, everything looked okay, but definitely flaring in the rectum. Doc was going to switch me to Remicade.  Two weeks after Colonoscopy I had growing abdominal pain. Went to the ER- Burst Appendix and Gallstones! BARF! 1 week hospital stay to get the infection under control, drain put in to get the stuff out. And sent home with a PICC line and more antibiotics for a couple weeks.  

Now I'm scheduled to have surgery April 17th   Hoping they can complete Laproscopic remove appendix and gallbladder. Doctor thinks there might be scar tissue and a need to do a bowel resection. If that's the case they'll switch to open surgery . I'm supppppppper nervous.  Diabetes is doing okay right now- it's a little harder with the low residue diet I have to be on for now. Nothing spikes me faster than mashed potatoes! 

Sorry this is so long. I'm so glad I found you guys. It's hard to have diabetes and it's hard to have crohn's. Its darn near impossible to keep them both under control at once!!!


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## carolhew

Welcome Karen & Ron50,

Ron what a rough road you have been down! Prednisone was a nightmare for me!  I hope they find what is causing you to spill protein in your urine. My mother had something similar due to type 1 diabetes, she had to follow an extremely strict diet.

Karen, I have both diseases and my hubby has type 2.


Currently taking Humira 40 mg weekly and Azathioprine 150mg daily. 

Crohn's Dx June 2011, primarily in the TI some in the colon.

Past meds: Entocort, prednisone and Pentasa.


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## Karen




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## lizbeth

I'm so pleased that so many of you are sharing your stories here   Thi forum has been fantastic for me, I only joined a couple of months ago and have 'met' some wonderful people, thank you every one.

Hi JeepBeep, welcome to the group.  You definitely have had a lot to cope with and a bit more ahead.  I'm not surprised you're nervous.

I tried metformin twice but both times couldn't tolerate it, the most recent attempt was last September but it was so bad that I was rolling around the bed in extreme pain after just 4 days of pills, shortly after this I started to present with Crohns symptoms (although didn't know it was Crohns), my sister also had a similar experience and she now has UC.  Has anyone else had any difficulty tolerating metformin and if so what treatment did you have instead?

Karen how is your diabetes and how is your hubby at the minute?  And where do you get those lovely images?

What's today like for eveyone, mine is not so good sadly  lots of pain and tooooo many BMs, been awake since 3 this morning.  I've been strict with my diet (I think) so not sure what's caused this flare up?  Hope you're all having a good one.


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## Karen

Karen how is your diabetes ... My diabetes is doing well as I need to go into the DOCTOR OFFICE sometime soon and get my A1C checked out ... I am on 2 different medications: JANUVIA & Glucophage (metformin) and so I am still on them so we will see what happens next !!  But I will be back to share UPDATE when I do get the test done !!

Hubby ... He is doing well as long as he does not OVERDUE things and when he does that he just feels awful ... but he has not been sick, has not had any flare up's or has been back to see his GI DOCTOR so overall he is doing well. Keeping busy with work and things around the house !!

Where do I get all my pictures ... Well the one I shared this morning I have in my collection and love to share them with the different groups I am on to make someone smile if they are down ... so then the one that I made up for my hubby and son in my signature tag I made up on a place called DAISY PATH and so if you want something made up let me know and I can see what I can do to make something up for you ... 

So ... take care and I shall be back soon !!!

:ghug: :ghug:


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## carolhew

Jeep beep,
Wow...I hope you continue to heal! I know when I am in pain my bg levels spike, part of my problem now.

Lizbeth, I have had issues with metformin. A lot of it depended on the manufacturer. They now have me on Glumetza which is an extended release metformin and I seem to be tolerating it well. I also take Victoza daily injections which work great but can cause nausea. 


Currently taking Humira 40 mg weekly and Azathioprine 150mg daily. 

Crohn's Dx June 2011, primarily in the TI some in the colon.

Past meds: Entocort, prednisone and Pentasa.


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## mermenbananas

Diagnosed with Type 1 diabetes 3 months after my Crohn's diagnosis. The diabetes consumes my life. It's been ~2.5 years now, and I've yet to get my diabetes under control. I have even been on an insulin pump for almost a year, but I haven't had luck with that either. Fortunately, I haven't had many stomach issues -- just coping with the diabetes...


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## lizbeth

Hi mermanbananas welcome on board .  I reckon cos you got both so close together that is why your having trouble gaining control of the diabetes, I have found it difficult controlling mine before I got Crohns, now....well my BGs have a mind of their own!!  Keep at it, you will get there.

Carolhew..I'm not sure what metformin I had but what ever it was my tummy did not like it  My sister was started on Victoza to help her lose weight, she also experienced nausea but it passed and she has lost 56 lbs! It has been fantastic for her.

How is everyone doing today?


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## ron50

I get so totally frustrated. It has been over fifteen yers since I had cancer. After ca I was a health nut ,I walked up to fifty miles a week. I lost 33 kilos and I have never felt so bad in my life. I was rushed to hospital and dxed with acute pancreatitis. A small gallstone had blocked off my pancreatic duct. I lost my gallbladder. A month later the same doctor did an endoscopy. His primary dx was stomach ca. The biopsies showed it was severe ulceration. I stared on 80 mg of somac instead of 40. The ulceration gradually eased. It was at that stage that I gradually lost touch with my feet,the start of the neuropathy.   So I have had 15 years of absolute rubbish health. I follow all the rules ,I don't drink or smoke. I am careful of what I eat . On 1000 mg metformin a day my blood sugars are regulrly betweeen 5 and 7 (australian measure) which is about as good as it gets. What frustrates me is they can't find reasons for anything. My diabeties is not bad enough to cause the severity of the neuropathy. The kidney biopsies do not show that my problem relates to any of the known kidney diseases including diabetes. They don't know why I suddenly developed an erratic heart beat even tho it it can be caused by neuropathy. I keep suggesting that all of my ailments have a common cause but they keep on treating me as though they are all separate illnesses. I am sure that the latest flare in the neuropathy coincided with when I went back on methotrexate. If the original cause of the neuropathy was toxic chemotherapy drugs it would follow that taking another chemo agent ,methotrexate, would not be helping.. Sorry,vent over...Ron.


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## lizbeth

Vent away, it's better to get it off your chest! I'm sorry you're having such a rough time. Life can be very cruel. :ghug: sending you a big virtual hug.


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## Jen

Hi all!
I have diabetes type 1 and Crohn's desease. 
I was diagnosed with diabetes when I was 16 and my life was pretty good until I was diagnosed with Crohn's at 24 (in 2010).
After that all my body started to ruin. 

Though my Crohn's is rather mild, I started experiencing lots of health issues that came together with the first signs of Crohn's: fatique, food allergies, skin rashes, loss of smell, easy to catch colds and what's the wosrt is the constant back pain. Mostly it's an upper back pain but it may migrate to the lower back. Docs said it'd due to scoliosis but I've never had any sign of back problems until the Crohn's appeared. 

I beleive that most of my health problems can be solved by the proper diet (like all organic, non-processed and no gluten) but I'm too lazy for that 

I love my job, it allows me to forget how sick I am and normally I feel much better when I'm at work.
The diabetes itself is just a regime for me and it brings much less probelms comparing to the back pains and Crohn's side effects.

I'm glad to find people here who understand the problems of having both tough diseases. 
Having Crohn's and diabetes separately is already a daily challenge for many, but imagine that you have both.


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## lizbeth

Hi everyone, hope you've had a great day.

I had a small bowel serious today, the prep yesterday didn't go well, the picolax didn't work until 11pm so I spent most of the night on the loo.  My bgs were really elevated so I dose adjusted and got it down...but too low so I halved my levemir.  I was first on list at 9am and finished by 11. I felt really sick and was so glad to get home to bed. I didn't expect to feel so ill, is this normal? My bgs are still high  Sorry for moaning, it's been one of those times when diabetes and crohns have clashed again.

Hi Jen, thanks for your post.  It really is a challenge living with both conditions, I'm happy that your diabetes is working out for you.  what job do you do? What medications do you manage your conditions with? 

I'm going to bed now wishing you all a peaceful day or sleep depending where you are. Take care.


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## ron50

Hi Lynda,
                 Since ca I have had a colonoscopy most years around 13 so far. The first few ,afterwards I felt great. Then I had one during chemo. I thought I would die. In  recent times they have tried me on colo-caps for the prep . They don't clean me out and my gi started whinging so last two have been done in hospital the first with colocaps ,still didn't clear and the last one with the old pico prep . She made them give me nearly seven and a half litres of the stuff. I was not a happy camper. They checked my bs regularly and it was low but still safe.It took days to get over it so hugs to you I hope you come down to normal soon. It is like walking a tightrope ,if you fall or get pushed off ,it is so hard to get back on and get your balance again...Ron.


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## grandmajese

Nice to know that I'm not the only one, this combo really does suck. I've been sick a long time, took forever to get a confirmed diagnosis. I can't get treated till they know what's wrong right? The meds are scary though, Imuran 50 mg 3 x a day. On the bright side the nausea should help me lose weight!


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## lizbeth

Thanks Ron, I'm still feeling a bit unwell but nothing like I did on Monday, my BGs are still high though. 7 1/2 litres, did you not feel like you were going to pop?  

Hello grandmajese, welcome to the group  How is your diabetes medicated? I thought I would lose weight especially after the barium breakfast, but no I'm still heavy, others think I've lost but  I think they need their eyes tested lol.  My GI is considering imuran for me next possibly?  I take it the meds are making you sick? Have you had any other side effects?

How is everyone today?  Hope you all have a great day.


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## Jen

Hi Lynda!
I'm taking Salofalk for Crohn's and my insulins are Novorapid and Protophane.
I've recently returned to insulin pens after 4 years of wearing insulin pump.
It is weird but I have better compensation on shots than on pump.

For CD I'm trying to avoid a lot of meds while it is possible. 1 gramm of Salofalk keeps me more or less in shape. I've also noticed that gluten worsens many symptoms for me: not only bowel-related but also back pain, headaches and general mood. So I try to avoid gluten as much as I can.

I'm working as a software analyst in the medical area (software for planning knee and hip replacements, etc.).
Work really keeps me alive as I have no time to think about health!
Of course I measure BG many times a day and etc. but this is more a routine and it is not disappointing.
I also try not to spend much time on the health forums, this one is great though and I cannot help watching it from time to time


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## grandmajese

I'm not on the imuran yet, I'm stalling.the side effects really scare me. I'm on glucaphage for the diabetes. still around 200. barium is disgusting!


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## Karen

_Welcome grandmajese ... Good to see someone new join in !!  I too am on Glucophage for my diabetes ... and so I remember when my hubby was on imuran and so he is no longer on any of his meds for his Crohn's so that is a good thing. I do recall him saying that the barium was awful tasting so ... I do not miss those days of going with him for some of his check ups !!!  So, take care and stay strong !!!_


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## lizbeth

Hello everyone, ho have you all been? I'm feeling much better just very tired but that's not unusual.  I agree...barium is yuck!! and it's hat happens when it goes through you! Oh my goodness I wasn't expecting that lol. 

Hope you 'll have a great day, k care.:ghug:


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## lizbeth

Good morning everyone, how are you all today?

I'm going to a physio appt later on when I hope to be given something that will help get my joints under control, been having a rough time lately with my back and wrist especially.  Still having difficulty too controlling my BGs, they're a bit all over the place these days?  

On the up side , it's a beautiful day  the sun is shining :sun: hope you're all okay, best wishes.


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## ron50

I'm going thru my weekly cycle,Inject mtx on Sunday night ,feel like crap on monday and tuesday then gradually feel better until sunday when it all starts again. Don't know what is happening with my left hand. I have neuropathy in both feet and legs and in my left hand. Mid last week the lower half of my hand went from numb and tingly to almost totally dead and has stayed that way. Neuropathy seems to be the thing that doctors completely ignore yet its the thing that bothers me the most. Ages ago I tried lyrica ,neurontin and endep. They did not work at doses I could afford and at doses I couldn't they turn me into a zombie. I have been doing a lot of reading on neuropathy in particular a fact sheet from the National Institute for Neurological disorders and stroke.  In the paper it says that neuropathy can cause irregular heartbeats and breathing problems. I am starting to get some really bad vibes on where I am heading....Ron.


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## Karen

Hello Ron ... I will be praying for you to find the answers that your looking for and also to find the HEALING that your needing too !!!  Stay strong and keep your head up !!!


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## lizbeth

Yikes Ron I can see we're you're going with that thought.....try not to worry but you should have a chat with you gp (and about your hand) to put your mind at rest.

I knew nothing about diabetes when my sister was diagnosed 4 months before me so I got a book about it......well I couldn't read it coz it scared me!! I recently read somewhere that the eyes are an indicator if what's going on inside so as I've had 2 laser treatments on my right eye  I began to panic a bit.  I don't know if what I read was correct and I should have taken more notice of the source.

What is endep.? I'm not familiar with it. 

Keep your chin up :ghug:


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## grandmajese

ciroflaxacin, metronidazole. sound familiar? they are anitboticts, my doc started me on them friday and I've been REALLY sick all weekend. I could barely stand sunday. I'm going to try taking one and not the other to see which one is making me so sick.


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## lizbeth

Have you tried taking them either with or without food? I know it sounds obvious and I don't intend to be disrespectful.  Sorry you're feeling rough


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## ron50

Endep is one of the tri-cyclic anti-depressants that also acts as a neurological analgesic. Was only on it for a week and I was off with the pixies. I may have lived thru the sixties but I'm not into substances that are mind altering,they scare me. When I had my ca removed I could not take morphine,same deal.. Ron.


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## lizbeth

Gee Ron you do have your difficulties, big hug coming your way :ghug:


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## denisejean1953

Hello All,

Am new to the forum.  Question, please.  I see that some of you here are taking Humira.  My new gastro doctor wants me to begin taking it.  (If and when my insurance company decides to cover the cost.)  How long before there are signs that it helps the pain and the multitude of bm's every day?  Any info is most appreciated.  Thank you.


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## lizbeth

Welcome Denisejean 1953, Thanks for joining us.  From what I understand you may feel a little better after the first injection but it could take up to 3 monthes to feel the full effect, I put in a link below that may give you some info, hope it helps.

http://www.nacc.org.uk/downloads/factsheets/drugAdalimumab.pdf

How is everyone today? :ghug:


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## grandmajese

lizbeth said:


> Have you tried taking them either with or without food? I know it sounds obvious and I don't intend to be disrespectful.  Sorry you're feeling rough


yes, they both say on the label to take with food. didn't help. my regular doc told me not to take them. I have ulcers in my colen and it was making the bleeding worse. the specialist that i see for my guts isn't very sympathetic to my intolerance for most meds. My regular doc told me to research alternatives to the imuran. she doesn't want me to take it. she's really cool. it's saturday and she just called me to see if the new med to help me sleep worked. she's great!


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## lizbeth

Well that's great that you have someone in your corner.  So what's the next step for you regarding medication?


How is everyone today? Thinking about you all.


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## Karen

_Have a great Wednesday !!!  I wanted to tell you all that I went in and had my BLOOD WORK and for those here in the US I am sure that those who are DIABETIC know what a A1C is ... well mine had not changed so I am sitting at 6.9 and so for the next 4 months I am needing to be GOOD and to watch what I am eating !!!  So, stay strong and I shall see you all soon !!_


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## lizbeth

Well done Karen I would love mine to be that level, keep up the good work :thumright:

Happy Wednesday to you too.....

It's my wedding anniversary today...24 years, so I'm doing a special dinner and I'm going to have a treat of pudding  hope I don't regret it  the morning...


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## Karen

many more to you and your hubby


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## lizbeth

Thank you 

Tum ok so far and skipped pudding so BG was grand too


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## Jennifer

Alright, I need some help for my mom. She doesn't have Crohn's but is a diabetic.

She was diagnosed with type 2 diabetes about 2 years ago yet I'm pretty sure she was dealing with it for many years before as she would often vomit in the mornings for no reason. Since she started treatment, the morning vomiting stopped. She's 56 years old and her blood sugar was over 400 when she was finally diagnosed. Now her blood sugar fluctuates between 110 (rarely that low) to over 200.

She takes Metformin but I don't know the dose. She's been taking just that since her diagnosis but since her blood sugar doesn't seem stable after all this time, I don't see it as the best treatment plan for her (the dose has been tweaked at least once, honestly I think her diabetes doctor is a dip). She's already changed her diet and checks her blood sugar regularly and exercises everyday. She's lost a lot of weight fairly quickly since her diagnosis and now she's at a normal weight (she was never obese, just overweight).

Her father also has type 2 diabetes and takes Metformin and insulin (one as needed, I think NovoLog and the other is once every morning and is supposed to last all day, I forget the name). I don't understand why my mom isn't on insulin as well when his blood sugar is and has always been much lower than her's.

She also has heart problems and takes medication for that. The main problem now is that her triglycerides are over 800 and have been for a while. Diet and exercise aren't helping in that department. I read that poorly controlled diabetes can cause your triglycerides to be high. I'm really hoping that someone on the forum will have some information on how to get the triglycerides down or control the diabetes if its that. The diet for lowering triglycerides is very similar to a diabetic diet (except she can't add a lot of fruits because of the diabetes) and she did use fish oil in the past to try and lower it but she didn't see any improvement from that either. She's going to try it again but I still think it may be related to the diabetes. 

Any help is appreciate.


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## Aura

Hi, I take metformin 850 x 3 times per day. I have type 2, like my mother, nana and grannie did. I also have crohns, my diabetes is well controlled on this amount of metformin and on my current diet which is basically eating what works for my body and trying not to be too naughty. Find out her dose, and is she taking them when she needs to.


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## Jennifer

I'll find out the dose tomorrow. I know she takes all her meds on time though.


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## Beach

If your mom is going to try taking fish oil again, an area I've seen others become confused on is the amount of fish oil to take.  From what I've read, most therapeutic doses begin with taking 2000mgs of the active ingredient EPA/DHA a day.  A typical fish oil capsule contains 300mgs of EPA/DHA, so around 7 capsules a day is wanted to reach that amount of EPA/DHA.  If that isn't helping enough, then upping the dosage of fish oil might get the job done.  

Another area that can cause confusion with triglyceride numbers is weight loss.  If when your mom was first taking fish oil and also was loosing weight at the same time, chances are instead of her triglyceride levels dropping they rose higher.  Weight loss can cause triglyceride, and lipid levels overall, to go hay wired for awhile.  

A cardiologist's blog that I follow has written some about this:  

"What is this wacky thing called “weight loss”?"

http://blog.trackyourplaque.com/2011/09/what-is-this-wacky-thing-called-weight-loss.html 

&

"Getting your dose of fish oil right"

http://blog.trackyourplaque.com/2008/12/getting-your-dose-of-fish-oil-right.html


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## lizbeth

Hi Jennifer, 

http://www.webmd.com/cholesterol-management/lowering-triglyceride-levels?page=2

Found this on internet and wondered if it could help your mum, although I think from what you've said she is doing all those things ?  Reducing the amount of carbohydrate would help in 2 ways, 1-less carbs to process into blood glucose in body, thus metformin has less BG to work on which should lower the overall sugar levels and 2-less carbs will help reduce levels of triglycerides.  I have always found if I put on weight it's harder to control my BG and when I lose weight it's easier.  I had previously reduced my carb intake and it was much easier to control my BG.    

Armed with the info you have about your Grandfathers diabetic treatment, I think it would be perfectly reasonable to speak to your mums Dr to discuss a more effective treatment plan, maybe going onto insulin, a combination of metformin and insulin or a change to a different oral medication?  And if your mum isn't happy with the outcome of that discussion maybe consider a change of Dr?.  I hope she gets something a bit more satisfying and her levels begin to reduce, good luck.


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## grandmajese

I have decided that my doctors are stupid. This is my life and they don't seem to realize that. I am NOT taking a medicine that makes me so sick that I can't function. I just started the "Eat Right 4 Your Type" diet, has anyone else tried this? When I did an elimination diet I "eliminated" most of the stuff that the book says I shouldn't eat. so far so good. I do feel better and the bleeding ( my colon) has slowed down. I have noticed that when I don't sleep well, which is most of the time, my blood sugar is higher by at least 40 points. the nurse told me that is normal. of course the only answer the doc has is more pills. doctor suck:ybatty:


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## lizbeth

Grandmajese do you ever do your BGs through the night? Reason I ask is I was thinking about nocturnal hypos, before I realize I'm having a hypo at night I toss and turn and can't sleep, if I do get to sleep then most often my BG will be high in the morning. Oh it's such fun!......NOT!  Which medication is it that you're not going to take?  Sorry I don't know anything about the diets you mentioned, my elimination diet is just me cutting out things I know I can't eat, I do find it's very restrictive trying to manage both diseases . I do need to look into diet management more.

Karen ......how did your surgery go? 

Jennifer...........what about your mum, how is she getting on?

How is everyone else doing these days?


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## Aura

My bloods came back great for my hbca1 stuff I forget what its called


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## lizbeth

That's great news, I love it when that happens but sadly for me it's not very often lol,  I am finding it difficult to control my BGs at the minute.

Question for everyone.....do you find that your body reacts differently even if you were to eat the same foods regularly?  I'm finding that even if I eat the same foods everyday that my BGs won't necessarily be the same and I need to adjust my insulin all the time.


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## grandmajese

check my blood sugar when I wake up and can't go back to sleep? I could do that, great now I'm curious! lol


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## Aura

If I'm stressed or sick they play up


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## lizbeth

http://www.diabetes.co.uk/nocturnal-hypoglycemia.html

This is a link about nocturnal hypos that you might find helpful.  I have quite a few hypos during the night, although I do generally wake up I also suspect that I've slept through some as well.  It also explains why I might have higher than expected BMs in the mornings.  

My blood glucose readings would be effected by stress and sickness too, but I have occasionally found that instead of going up they drop and I even ended up in hospital once because of it.


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## ron50

I saw a neurologist a few months back. I gave him my full medical history including being dxed with type 2 diabetes after being on 75 mg daily of prednisone for 18 mos. He scheduled nerve conductivity tests and yesterday I finally got in for my tests. I had some done years ago and I remember thinking that they were no big deal. Yesterday I felt like I was in an electric chair being operated by a sadist, Halfway thru the tests the technician called the neurologist in and he re-did several of the procedures. 
      When I first saw the doctor I told him that I thought I  had severe peripheral neuropathy. My question was ,What was causing it and how did I limit or reverse the damage. At the end of the tests yesterday he told me I had severe peripheral neuropathy in both feet and legs. He did not know what caused it and he could not help me. Those words of wisdom cost me close to $600.00 for the two visits.
       I have had several long glucose tests over the past thirty years. They have shown me to be close to but not in the diabetic range. One doctor asked for a glucose test with insulin levels. At two hours insulin levels were supposed to be back to under 20 mml per litre , mine were 292 mml per litre. It is starting to look like insulin resistance over many years have destroyed my peripheral nerves.  Unfortunately in the past six months I have developed an ectopic heart beat. Both my nephrologist and gp claim it is a benign condition , some days when I take my pulse every second beat is missing. I asked the neurologist if it could be neuropathy related . He just said ,get it checked NOW. Unfortunately that seems to illustrate my history with doctors...Little care and even less responsibility. I really don't think I am going to get much further down the path of life I just wish it were quick and clean ,not so drawn out and painful. Ron.


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## DLTooley

My diabetes was diet controlled, but after the onset of my IBD symptoms (something besides Crohns) it returned.  I'm reading that metformin does have digestive side effects, but those weren't an issue for me when I first took it, a few years ago.  Can Metformin contribute to a flare or make particular types of IBD worse?


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## Careyearl

Just diagnosed with crohns, have had diabetes since my first pregnancy 23 years ago.  Have been on insulin for about 15 years.  Have struggled for a long time.  Things were going really well in January 2012 when I got into a program at a local gym called Give it back, get it back.  Something like the biggest loser.  I was in a fantastic supportive group of 8 ladies and the most amazing trainer.  Have never felt so good.. Lost 30 lbs diabetes fantastic and then last June things went backwards.  Thought it was depression but was a flare up.  Sugars went all to hell, had to take more insulin which resulted in weight gain.  Since then has been so hard to get the weight off.  High sugars and lots of insulin.  Dr since put me on metformin and victoza.  Has helped but it is so expensive.  I think my meds without the Humira are running at $500 a month.  Thank goodness for BC Fair Pharmacare.  Since my recent crohns diagnosis it has been quite a ride but thankful that knowing what I have really explains a lot and now I can move forward to get back to well being and doing some of the things that I have grown to love like getting back to the gym and joining my fitness buddies.


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## lblair

Welcome Karen!!!!


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## riclow

Hello I have pre diabetes and I have been like this for months but lately for about a month or so my readings have been getting out of hand I have had some that have been 160 and higher and others that have been around 125 to the 130's so I have set up an appointment with my doctor to discuss this and get some blood work done I am hoping it is at worse type 2 and not type 1 like my father had. I also have not been able to get officially diagnosed with Crohn's yet because I have not been able to afford the colonoscopy, MRI, or a catscan. I finally got some insurance now and I hope I can at least get an MRI done because my out-of-pocket is still $1900 for the colonoscopy. My gastrologist says that he can still diagnose me with an MRI just not be able to make any biopsies. Hopefully I can wait till January 14, 2014 to do the colonoscopy when with the Obamacare there will not be a deductible.:ylol2: Well this is my story so far I will write again.


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## Careyearl

Hi riclow,  I find when I'm in an active flare my blood sugars are higher due to the fact my body is fighting.  I have to up my insulin at that point to get better control.  So sorry you can't get your tests yet.  In 2011 I had to visit a dr. In Maui and had to pay $300 for the visit while not a lot here in our province a Dr. Would get approx $40 for the same visit.  Crazy the difference.  Well hopefully things change and you get a better healthcare system.  Doesn't seem right that you can't get proper healthcare just because you don't have the money.


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## riclow

I have a question for anyone. I have not been diagnosed with neither Crohn's or diabetes. I thought I was going to get some new insurance but then I found out I still cannot afford it. I was going to use the insurance to finally get tested for Crohn's because both me and my gastrologist thinks I have Crohn's in my ileium area. Also, because I am leaking out infection and pus from my anus and I look like I am pregnant and I am a man :lol:. I am going to my doctor in October to get blood tests done to see if I have gone from being a pre-diabetic to either a type 1 or type 2 diabetic; my dad was a type 1. My readings I have done over the past two months I have been very high with the lowest being in the 130's and the highest being 200 or higher. Alright I have read from another diabetic forum they have been taking a medication that starts like this Met-- and I can't remember the whole name but it tears their digestive system up and I read that they have diarrhea quite a bit and other problems. Finally my question is this is there a medication that is better for people with both Crohn's and diabetes that does not tear up the digestion system so bad?


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## riclow

Hello members. Just a quick reminder the last post I gave is very important to me because I am very concerned about it. Can someone please give me some kind of reply to it. Thanks.


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## Careyearl

The medication that is like metformin is called glumetza.  I use it and it doesn't seem to irritate mt gut like metformin.  It is a slow release med and I only take it once a day.


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## Aura

I take 4 x 850 mg metformin a day, I'm type 2, like my mum, nana and grannie. But it doesn't impact on my guts. It also helps my poly cystic ovary syndrome as well.


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## lizbeth

Hello everybody  and welcome to all the new members.  Sorry I haven't been present for a while, I haven't been having such a good time due to joint and back pains, I saw my GP who has changed my pain relief regime and I started taking morphine and now also acupan. It has slightly dulled the joint pain etc but for the first time in ten months my crohns pain is munch easier, yay!! Then I was told I don't have crohns that it's IBS!! I don't believe it is, not after the experience of living with `crohns` for all this time. So I'm absolutely shattered.

My diabetes is all over the place and  My Dr thinks there is an issue with carb absorption and that I could eat and do the same thing everyday but my sugars would never be the same.......and he's right, I have to dose adjust every injection.  He started me on a new long acting insulin called Tresiba, it apparently can keep working for up to 42 hours and can reduce the amount of hypos, I have up to 7 a week.

Does anyone else have trouble controlling their blood sugars?

Riclow I'm so sorry that you can't have your tests, I can't begin to imagine how frustrating that must be. I was wondering why you were worried about having type 1 diabetes, is it that your dad had a bad time with type 1 diabetes and thats why you're worried about it? Please try not to worry. Whatever your concerns are please feel free to ask us anything.  I'm sorry I can't answer your question about the medication, I did try metformin and it didn't agree with me but I know that it works well for a lot of people so try not to dismiss it. It might be that it would work well for you too. I wish you well.


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## ron50

I am on 500gms of metformin morning and night. I have been notorious since chemo therapy for getting bad reactions to most drugs. I'm happy to say it has been no worries with metformin . I don't test every day ,usually every second week and get an average. The week before last it was 5.8 which is perfect. This week I have had a couple of 7.2 but it never gets to 7.5. In the words of my gp I am well controlled.  My heart is still doing weird things. They thought I was suffering from a few to many premature ventricular ectopic beats ,so they put a monitor on me for 24 hrs. They said up to a few hundred is ok. I recorded over ten thousand so I see the cardiac specialist in two weeks


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## lizbeth

ron50 said:


> I am on 500gms of metformin morning and night. I have been notorious since chemo therapy for getting bad reactions to most drugs. I'm happy to say it has been no worries with metformin . I don't test every day ,usually every second week and get an average. The week before last it was 5.8 which is perfect. This week I have had a couple of 7.2 but it never gets to 7.5. In the words of my gp I am well controlled.  My heart is still doing weird things. They thought I was suffering from a few to many premature ventricular ectopic beats ,so they put a monitor on me for 24 hrs. They said up to a few hundred is ok. I recorded over ten thousand so I see the cardiac specialist in two weeks


Ron your blood sugars are fantastic, mine swing all over the place, they can range from 2.0 up to 25.6 and I find it really hard to get them under control. I take sitaglipten which is the tablet form of victosa, it seems to have helped with my overall HbA1c which was 8.0 the last time.  I'm sorry to hear about your heart trouble, it seems that you never get a quiet time with your health, I do hope the appointment with the cardiologist goes well.


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## HavNoFear

Well, about a year ago I was diagnosed as a insulin dependent type 2 diabetic after being hospitalized from it. Yesterday, I was diagnosed with Crohn's.

I find it kind of ironic. If I had known I had Crohn's EARLIER, I may have started eating better and avoided becoming diabetic! But who knows.


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## lizbeth

HavNoFear.....Welcome to the forum and this support group though I am sorry that you've had to join us. Yes it does seem a bit unfair in life, as you say if crohns had come first then maybe diabetes wouldn't have come along.....who knows?  How are you finding managing the two?  Please feel free to ask us anything and I'm sure someone might be able to help.

How is everyone else doing?


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## ron50

Had a funny feeling so I rang my gastro. She has changed practices and had been trying to get in touch with me. I'm booked in for a scope in October. I don't go too well taking the prep so they put me in hospital for the duration..no escape possible!!! Blood sugars will definitely take a dive that week. Cheers  ron.


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## lizbeth

ron50 said:


> Had a funny feeling so I rang my gastro. She has changed practices and had been trying to get in touch with me. I'm booked in for a scope in October. I don't go too well taking the prep so they put me in hospital for the duration..no escape possible!!! Blood sugars will definitely take a dive that week. Cheers  ron.



Hi everyone, just wondering how you are all doing? Has anyone been prescribed any new medications or do you have any grumbles you want to get off your chest . Would love to hear how you all are. 

What date is your score Ron?


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## ron50

I go in on the 29 th. It is first time I have been out to three yearly scopes since I had colon cancer. I am a bit nervous as I have had polyps with pre cancerous changes at twelve months. If it is clear I will be very relieved. Ron.


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## lizbeth

ron50 said:


> I go in on the 29 th. It is first time I have been out to three yearly scopes since I had colon cancer. I am a bit nervous as I have had polyps with pre cancerous changes at twelve months. If it is clear I will be very relieved. Ron.


I will keep my fingers crossed that it works out ok .


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## ron50

Scope may not happen . I have developed a flu ,they think it is type A . I went to my gp he is very thorough. He gave me three anti-biots but he also sent me for a chest x-ray and bloods. I have been in hospital for most of the week , got out yesterday. The bloods came back positive for troponin which indicates a heart attack or heart muscle damage. I spent most of my time in the medical assessment ward. They have dxed me with serious chronic asthma , standard environmentally triggered , bronchial from the flu and cardiac asthma which is a pseudo asthma where the effects of congestive heart failure mimic the same symptoms as asthma. They seem to have forgotten about the flu and I fear I am heading toward pneumonia. I have been put on a preventive and emergency inhaler. Both have steroids so my sugars are also mis-behaving. My scope is only a few weeks away so I doubt if they will go ahead. They are going to do follow ups to assess my level of congestive heart failure and if there are obvious areas of damage to my heart muscle. So tired of dying an inch at a time , if I was a dog they would have used the big green needle. Ron.


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## grandmajese

I REALLY hope you get better. Having Crohns and Diabeties sucks. Being on more meds than I can remember sucks. Being on 2 immune suppressors is scary. Steroids too! oh hell no! Be sure to harass the nurses. They get paid good, they should at least be entertaining. :dance:


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## grandmajese

Any suggestions for something to replace the metformin? they lowered my dose and put me on time released and that helped but if things don't get better I'm going to have to take Humira every week. I'd rather not. I am also on amaryl but I'm not sure if that would make it better or worse. Back to Web MD I guess. I get more info there than at the doctors office. thanks, Jese


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## Careyearl

I couldn't do the metformin so I take glumetza once a day.  As well I take victoza which has really helped with my blood sugars.  I hear you on the amount if meds.  Having both crohns and diabetes is so hard.  My doctor says no way to steroids.  It may take longer together to remission but it will get there.


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## lizbeth

ron50 said:


> Scope may not happen . I have developed a flu ,they think it is type A . I went to my gp he is very thorough. He gave me three anti-biots but he also sent me for a chest x-ray and bloods. I have been in hospital for most of the week , got out yesterday. The bloods came back positive for troponin which indicates a heart attack or heart muscle damage. I spent most of my time in the medical assessment ward. They have dxed me with serious chronic asthma , standard environmentally triggered , bronchial from the flu and cardiac asthma which is a pseudo asthma where the effects of congestive heart failure mimic the same symptoms as asthma. They seem to have forgotten about the flu and I fear I am heading toward pneumonia. I have been put on a preventive and emergency inhaler. Both have steroids so my sugars are also mis-behaving. My scope is only a few weeks away so I doubt if they will go ahead. They are going to do follow ups to assess my level of congestive heart failure and if there are obvious areas of damage to my heart muscle. So tired of dying an inch at a time , if I was a dog they would have used the big green needle. Ron.


Ron are you working your way through the medical dictionary, you've had more than your fair share of problems, wish you could stop all the hurting and have some peace.  It's probably no comfort that at least the drs picked up what the heart problem was and appear to be thorough (not including the flu!), cardiac asthma is something I've not heard of before but from what I've read seems it could be tricky to pick up, I also read that treatment will help, I know, more meds ........but maybe when they get it sorted you will feel better, lREALLY, REALLY hope so. :ghug:

Grandmajese, my suggestion would be to discuss with your Dr stopping metformin for a trial period, switching to victoza instead (my sister has had great results on victoza).  It would be useful to find out if your gut problems improve if not taking metformin which might mean you wouldn't need humira. I recently talked with a lady who had your 2 tested with metformin, her bgs were not good so she's being switched to victoza, since she stopped the metformin her chronic diarrhoea has stopped.  I am no Dr so this really is just a suggestion, please talk with your Dr first before changing anything.

How is everyone else doing?


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## ron50

I saw my gp again during the week. He had a result of swabs they took at the hospital . It was parainfluenza. Apparently most common in children. (I live alone, go figure). The flu shot does not work on it nor have they been able to make a vaccine for it. Some kids barely know they have it but for adults over 60 with heart or immune problems it can be serious. I can vouch for that . So far the meds have not helped much. Still coughing up my lungs and getting chest pains. They have postponed my scope till Nov 13th. They said no anaesthetic while I have any sign of flu.  Ron.


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## lizbeth

I'm sorry to hear that Ron, would it help at all if you steamed yourself over a bowl of boiling water and a towel over your head?  Might moisten up the airways a bit and help with the coughing?  I truly wish you to have better times. :ghug:


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## Mike58

Hi all,
I finally found the support group that matched my diseases.   With that said,  it is time that I involve myself so that I can better understand my condition and maybe provide help for someone else. 
I am type 2 diabetic for the last 5 years.   I was diagnosed with IBD in October 2012.  I was hospitalized for a week with a major flare.   I learned quickly the love/hate relationship we have with an NG tube.  Over the past year, I have been hospitalized 4 times and had 20 inches of Ileum removed due to 3 strictures.   My GI changed my diagnosis to Crohn's and the battle is on.  I am currently on Remicade, Imuran (150 mg), 30 mg Prednisone and trying to taper but each time I get down to 10 mg, I start having major flares.   I take 1.8 ml Victoza daily, 2000 mg Metformin, Humalog for the bg spikes and 1 other med for my diabetes.   My blood pressure also became a big issue this year and now take 3 meds daily for that.   All in all, I take 19 prescription drugs and 4 vitamins/prebiotics each day.  :ybatty:  It's amazing how someone's life can change so dramatically over 13 months. 
I will hang in there and share my story as it unfolds.   Once I learn all the functions of this forum, I will be able to share more.
Thanks for this opportunity.


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## Careyearl

Hi Mike58:

Your story is somewhat similar being that we are both persons with diabetes and crohns.  I haven't had the surgeries as you have but we have some meds that are similar.  Keep your chin up and stay positive.  It does help!


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## carrollco

Last April I went in for my physical. Having been on a low residue diet for years the sad state of my health became apparent. I had high blood pressure, diabetes, Crohn's that was not well controlled, AND Hashimoto's disease (autoimmune thyroid disease). Oh, and a rapid heart rate with a resting pulse of 150. 

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.


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## carrollco

I will try this again... To make a long story short I stopped Humira, went onto the SCD diet and lost 40 pounds. My high blood pressure is gone as is the diabetes. I am trying medical marijuana for its inflammatory properties, but so far no luck. I take meds for a thyroid that can't decide if it's fast or slow and meds for my heart rate. *sigh* So even though the blood sugars are much improved, I have to monitor them 4x a day. This is no easy road to travel. 

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.


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## ron50

Well I finally had my scope. NO CANCER only one small polyp removed. No other problems in there. The same can't be said for my kidneys. I am now leaking around 5 grams of protein a day. My sugars are not to bad considering I am using symbicort every morning. Unfortunately I have to start cyclosporine next Tuesday for nephrotic syndrome. I don't know how I will go. I hated methotrexate when I was on it. If I don't do something I may lose my kidneys and because I am immune- compromised I cant have a transplant. Ron.


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## Mike58

Carrollco,
My wife read me some info on the SCD diet.  I'm not sure what would be worse, that diet or the 30 pills I take daily for Crohns, diabetes,  high blood pressure,  and Neuropathy.   Keep us informed on the diet.  
We all can only try what works for us.


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## carrollco

The diet sucks. No question about it. I'd give a tooth for a chocolate chip cookie. Yum. Anyone who says different is.. Well I'll let it go. In my case, the stress of balancing all these conditions: metabolic syndrome, Crohn's, and Diabetes caused something in my brain to snap. Seriously. One day I woke up and threw down the gauntlet.  I just stopped eating except for water for 3 days. That is never a good idea, but I was not responsible for my actions. I had severe gastritis, a duodenal ulcer and iliitis with esophogeal spasms in addition to Crohn's in my colon. I started with broth, added veggies, then chicken. Now,  basically eat meat, veggies, and eggs. Dessert is a green smoothie or my version of chocolate yogurt. I have no idea how long I can keep this up, and just go on a day by day basis. Once a week I allow myself one treat like a cookie or whatever. I am a writer so my son bought me this under the desk bicycle for exercise and it really works. I am up to almost 2 hours a day. It was 29.99 and I think he bought it through Amazon.  Even when I don't feel well I can do an hour. I guess what I am saying is, I reached my breaking point with docs and medication. Something had to change and it turned out to be me. 


Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.


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## Mike58

I admire your dedication Louann.  I may be there sooner than later but for now I try to stick to the low res diet.  
Best holidays to you and yours.


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## milner06

Hey everybody,
I've been on the forums for a few months now for Crohn's, but I just now stumbled across this support group. My story is pretty simple...
In May of 2008 I was diagnosed with type 1 diabetes at the age of 24. Not too big of a deal. I was put on a pump right away and learned it pretty quick and had my number looking pretty good. My brother, who is 3 years older than me, was diagnosed with type 1 when he was 5. So I have been around it and the life style it comes with all my life.

Six months later I was diagnosed with mild UC. I didn't have any symptoms, just a little bit of blood in my stool and I was loosing weight like crazy. Doc started a few oral meds. (don't remember which ones) About six months later I started having bloody stool again. Changed GI docs between this time. I didn't care for the first one. In that first six months my UC went from mild to a point where almost all of my colon was ruined. My doc started me on remicade. Well, apparently I am allergic to it. After every infusion I would end up in the hopsital for a week. After putting up with his for about six months, I decided to leave that doc and all the local docs in town and head to Emory in Atlanta. There, I was told by my new GI that after all that I had been trough, surgery my be the best option. 

So in January of 2010 I had my entire colon removed and two more surgeries to creat a j-pouch. So this puts us at August of 2010. I was struggeling with recovering from my surgeries and living a normal life. I decided to leave my work place, due to loads of stress, and was able to claim disability until I was fully recovered.

In January of 2012 I started working again and have been doing really good since. I had a "pouchostomy" in april of 2013 and my pouch was starting to look kinda bad. My doc ran typical UC/Crohn's blood work and said that it's not showing as Crohn's on the blood work, but she wanted to treat it as if it were. So, Humira it was. This past June I started on it and have been doing pretty well with the "most painful 10 second shot in the world". A few weeks after my loading dose, I had a flare. My doc upped my frequency of shots. So right now I'm taking one shot a week and a couple of lomotils at night to help with leakage during the night. I am looking foward to being a part of this support group. Good health to all!


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## lizbeth

Hello everyone,

Welcome to all the new people .

I haven't been around for a while, unfortunately I've been in hospital with a flare and have been struggling at home since. I spent nearly 2 weeks in hospital where they brought forward my start date for methotrexate, on the day I was due to start I met the new gi consultant. He dropped a bombshell by telling me that he didn't believe that I had any inflammation, that I now have scarring which has formed at the site which was inflamed last year, though this does need to be confirmed by mri. After that I will more than likely need surgery . I was not expecting that. So I'm now on a soft diet until I see him again after the mri which won't take place until Feb. Luckily my diabetes appears to be doing ok, my daily results are pretty good most of the time, probably cos I can't eat very much.

I have enjoyed reading all your stories and look forward to getting to know you all better.

Ron how are you getting on with the star of the new medication? Good news about your score thankfully, I think you deserve a bit of good news....


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## Mike58

Hi everyone,
Sorry to hear about your scar tissue Lizbeth.  Hopefully you won't need the surgery because it can actually add to the scar tissue problem.   My GI doc already told me that he and my surgeon both feel scar tissue is a big problem with my recovery.  
The main thing is I hope all of us have an uneventful Merry Christmas this year and can toast to all of us returning in 2014.  
Happy holidays,
Mike


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## ron50

Sorry to hear of your problems Liz. It seems our common cry is "what now?" I haven't started cyclosporine yet . I have been having some problems with an abscess in my mouth. It is the wrong time of the year to see doctors or dentists ect. My neph gets back to work early Jan so if the abscess  has been dealt with he now wants me to start on the sixth . He has changed one of my bp meds to Ditilizem. Apparently it helps the cyclo to work better. I am not confident that I will not have an adverse reaction to cyclo. I am starting at a pretty low dose ,more to see if I react than if it helps. I have to work every day at Christmas as It is when I service the high school home ec sewing machines. I'm not really well enough to be doing them but unfortunately there is no plan B.  I seem to be tired all of the time and no amount of sleep helps. Not that I get much quality sleep. Best wishes to you all for Christmas and lets hope some of us catch a break next year...Ron.


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## lizbeth

Thank you for you kind words, I am always indebted to the wonderful people I meet her on the forum, it's heart warming to know others care even though we are hundreds of miles apart. 
Ron I hope that come the 6th you get to start the new meds and have no adverse effects, got my fingers crossed for you. Sending you some healthy vibes to help you get rid of that abscess or at the very least find an emergency dentist who can help you out. It's a shame you have to work but I hope you get at least a little time to rest and enjoy a bit of Christmas.

I wanted to wish everyone a happy, healthy and uneventful Christmas and New year, I hope Santa is good to you all and that you get to relax and have some fun. Take care everyone and stay away from the chocolates lol........:ghug::ghug:


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## carrollco

I ate chocolate pie. OK one and a half slices of chocolate pie. I ate it before I could stop myself. I am so going to pay.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.


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## lizbeth

carrollco said:


> I ate chocolate pie. OK one and a half slices of chocolate pie. I ate it before I could stop myself. I am so going to pay.
> 
> Louann Carroll
> www.louanncarroll.com
> Crohn's survivor and advocate
> Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.


Well did you pay for the chocolate pie or did you get away with it? I think it's so difficult to be good at this time of the year, my house is full of sweets and treats and I find it hard to resist sometimes, though I think it's okay to have an occasional treat.

I was fairly sensible with food just having the odd treat and ate a few brussel sprouts but I had much more alcohol than I would normally, I experienced so many hypos for days and the only reason I can think of was the booze?

How did everyone else manage over Christmas?


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## Mike58

I thought I would stir some thoughts tonight.  I too made it thru Christmas and yes did eat way too much.  On 12-27,  I had a flare up which has not ended.  It's really hard to keep my blood sugars in check when the Prednisone ways so heavily on your readings.  Then the Pred causes my hunger to increase which makes the blood sugar go crazy.  
Has anyone had much success in controlling their food intake while on Prednisone?   I was able to taper down to 5 mg per day, down from 40 mg but with the flare, am back up to 20 mg daily.  Any thoughts are appreciated.  :ybatty:


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## lizbeth

I think it's nearly impossible to control blood glucose when on pred for exactly the same reasons you mentioned. I've been told recently that if I need steroids then I should use them and just deal with the high readings but I'm still very worried about doing that because I have eye complications. What would you do?


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## Mike58

Hi Lizbeth,
I guess I would go with the pred but see my eye doc at the same time.  My eye doc told me that Crohn's can cause changes in your eyesight almost daily.  I believe this.
My endocrinologist told me that when he has a patient with type 2 and crohn's, that diabetes takes the back seat in priorities.   I've heard this more than once but I guess this is the hard part of living with both diseases.  It amazes me how much time it takes to manage both diseases daily.  Especially when I'm in a flare like right now.
Thanks for responding Lizbeth.  My best to you.  :ysmile:


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## carolhew

Mike, I am so sorry to hear what you are going through right now. I was on prednisone for 4 months 2 years ago. It was the most miserable time in my life! My fasting bg readings were in the high 400's, I was able to bring it down to the high 200's with Lantus, glipizide, victoza and metformin. I just craved sweets too! My eyesight was continually fluctuating, constant thirst, dizzy, bruising and finally my electrolytes went out of wack. I now have a new endocrinologist and we have a plan that I am to contact her immediately if they want to put me on prednisone. She said I would most likely have to use fast acting insulin if put on prednisone again. I hope to never have to use it again. 

Best wishes!!!!
Carol


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## Mike58

Carol,
Thanks for your reply.  I am going to talk to my Endo later this month about that type of plan since I'm still on Pred.  My insurance is no longer paying for Victoza so I guess I will talk to him about a substitute drug.  Not sure I need it since I'm still on insulin.  I am just having a hard time controlling my food and sweets intake right now.  I'm sure the doc will give me a strong lecture.


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## lizbeth

Mike I take the tablet equivalent of victoza, sitaglipten and I am also on insulin. Been on in 2 years now and my endo and pleased with the results. I had a Dr who thankfully has gone who lectured to the point of being insulting, it was so bad I was told by one of his colleagues that I never had to see him again. I don't believe lecturing is s good motivator at all.


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## ron50

It is a bit like walking a tightrope. None of us here appear to have a single problem , we all qualify as syndrome sufferers. With all the meds we have to take I am surprised that we are not in a flare of something all the time. I started cyclosporine on the 6th of Jan . I am going for my first bloods today to see how well my body is tolerating it. This week I also had another stress echo cardiogram and 24hr holter monitor. My bs have been out of whack for my standards but still ok for general standards. You never know till you are put on a new drug just what effects it will have on you. I was in hospital in November for a suspected heart attack,fortunately it was only a flu beating up my heart. They thought I was on way too many meds so they called in the hospital pharmacist to do a review. The result was that I needed them all plus a couple more to control asthma. It is not uncommon in people of my generation for the conversations to raise the question of drug taking. Do I take drugs...Hell yes!  Ron.


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## Mike58

Thanks Lizbeth, Ron, and Carol,
I appreciate all your thoughts on this issue of having Crohn's and Diabetes and God knows what else going on at the same time.  I think Ron said it best when he compared all of us as walking a tightrope.  It's been hard on all of us to keep walking that very narrow line.  If we lean slightly to either side, we could fall.  We have all been thru a lot, some of you much more than others, and I hope that we all keep supporting each other in this forum.  It is helping me mentally if not physically.   :smile:


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## Mike58

Ron50,
If my memory serves me, I remember you asking about strictures on another post.  I couldn't remember where so I am reaching out here.  I found this info on Remicade and strictures.  It does give a good definition of the cause of a stricture.

What if I have a stricture in my small intestine?

Remicade probably won't help. The natural history of Crohn's disease is to form ulcers on the inner intestinal wall which heal and then return over and over. Each time an ulcer heals some scar tissue (fibrosis) is formed. This scar tissue can accumulate over time and cause a narrowing in the small intestine or colon. This is called a stricture. A significant percentage of individuals may develop intestinal obstruction, or "blockage of the bowels," from these strictures. Remicade works best in reducing active inflammation, but has little effect on scar tissue which may be permanent. Reports have demonstrated that individuals who have intestinal strictures are less likely to respond to Remicade.  Full article at: http://www.gihealth.com/html/education/drugs/remicade.html


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## Mike58

Ron,
My memory did not serve me right.  Sorry I sent the stricture info to you.  It's still not bad reading.  I figured out it should have been sent to another Ron.


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## ron50

That's no worries Mike. I had stage three colon cancer. When they have your colon out on the table the membrane dries out and the rest of your life you suffer the joys of adhesions. I tend to fear constipation more than diarrheah. From bitter experience it is easier to stop one than restart the other.Cheers ron.


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## lizbeth

ron50 said:


> That's no worries Mike. I had stage three colon cancer. When they have your colon out on the table the membrane dries out and the rest of your life you suffer the joys of adhesions. I tend to fear constipation more than diarrheah. From bitter experience it is easier to stop one than restart the other.Cheers ron.


I too fear C rather than D, it's so sore to visit the loo under normal circumstance that C scares me a lot.  I'm having a "why is life so hard" time right now. I feel so unwell and have so much going on in life that I don't know how I'm going to keep my head above the water! Sorry for moaning  and feeling sorry for myself .


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## ron50

Hugs Liz, the very nature of what we on this board suffer makes us mighty tough and more that a little resilient. Just remember to breathe when your head is above the water. Ron. PS. My Nephrologist is being very aggressive with me . I survived 100mg a day of cyclosporine for two weeks ,so now I am on 200mg a day. Ron.


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## lizbeth

ron50 said:


> Hugs Liz, the very nature of what we on this board suffer makes us mighty tough and more that a little resilient. Just remember to breathe when your head is above the water. Ron. PS. My Nephrologist is being very aggressive with me . I survived 100mg a day of cyclosporine for two weeks ,so now I am on 200mg a day. Ron.


Hmmmm, yikes Ron, how are you feeling? Ps, thanks for the hugs, I definitely appreciated them . 

Something just occurred to me to mention.  Last time I was in hospital I discovered I had a reaction to Clexane (enoxaparin), within minutes of having an injection my eyesight went, one minute I could read and then a few minutes later I couldn't see to read at all. On looking into it further I found out it has to be used with caution in anyone who has diabetic retinopathy. I checked with the pharmacist who consulted with the drs and I was immediately taken off it. Just thought it was worth mentioning and sorry I didn't before now.


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## Mike58

I saw my Endocrinologist this past Friday and he took it easy on me.  Took me off the Victoza and Glimiperide but increased my insulin (Humalog) to 3 shots per day.  Have to stay on Metformin forever, 2000 mg per day.  He said as long as I have to be on Prednisone,  he will be changing my meds because Pred messes up diabetes like no other drug.  I need to lose a lot of weight but he again referred to the Pred.  Hard to do.  At least it will give me something to work at.
Liz, I was going to tell you that my GP now reviews all my current meds each visit just to make sure that they are not reacting to each other or reacting as little as possible.  Hang in there.


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## lizbeth

Thanks Mike 

My sister is concerned she will be taken off her victoza as she feels her weight loss is all down to the medication and nothing to do with her hard work. My father in law is also on victoza but has experienced a lot of side effects being on it. 

I've only been on pred once, just for 4 weeks,, during that time I was on triple insulin and my blood was up in the high twenties. My weight increases as you would expect and I still haven't been able to loose it despite having no appetite to speak of. Since that I have always avoided using pred which has been accepted by my medical team but recently my gp has said that I need pred then I need to take it and we'll just have to deal with the diabetes being screwed up.


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## ron50

No way I will ever take pred again ,I was on 75mg a day for nearly 18mos plus a taper. it is basically the reason I now have type two diabetes. I had 48 doses of chemo, years of methotrexate off and on but pred was the worst drug I have ever been on bar none. I am on symbicort now for asthma but take the minimum dose I can. Even that messes with sugars. My regular 6-7 has turned to 8-9.  Don't know how I am faring with the 200mg of cyclosporine. I constantly feel itchy and every afternoon I get a headache. Much like with methotrexate my neuropathy has gotten worse. I had bloods done on Friday and I see my neph tomorrow. Ron.


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## lizbeth

I will definitely try to avoid pred too,, last time I was in hospital they asked me what usually works and they would be guided by me as to what treatment they gave, so they didn't give pred which turns out was the right think to do as no inflammation was showing in my blood.  I just find it so complicated juggling all my health problems and trying to get on with every thing else life throws at me, I supposed those are the things that keep me grounded. My sugars atm are sitting in the low teens, which is easy too high, but I'm feeling with a sick dad and 120m mile round trips so I'm not surprised it's gone still squiffy.


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## ron50

Another two weeks and another change of dose.  200 mg a day was to much so I have been dropped to 150 mg. I am getting very tired and my tinnitus is getting much worse. I seem to be in pain all the time so my gp has added Cymbalta to the mix. Whilst this is happening my blood sugar levels have doubled. It's  very hard to get bagk on the tightrope. Ron.


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## lizbeth

How are things now Ron, have you sugars settled any or are they sill reacting the same way?

How is everyone else getting on?


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## Mike58

My diabetes is running wild.  Mornings are averaging 210, doc raised my base Humalog to 12 units plus the correction.  This 3 times a day.  I'm starting to feel like a human pin cushion.
The good news is I've tapered off the Prednisone.   The bad news is the doc and others told me it will take as long to loose the weight gain as how long I was on the Prednisone.   9 months, great.  Doc seems to think I'm going into remission.  I still have D 8 times per day.  I think Mayo is going to be the next stop.  Hope everyone else is hanging in there.
Snow in Denver last night.  14 degrees now.  I don't think winter will ever leave.       oo:


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## lizbeth

Good to hear that prednisone is gone, fingers crossed that you will be able to get your sugars to settle now too, in theory it should be a little easier now the steroids are out of the picture though I know practice is a whole lot harder than theory. 

It is disappointing about the weight gain, I know I find it very frustrating being over weight, I did read something interesting that hadn't occurred to me before, it was from a person with both crohns and diabetes talking about how difficult they found losing weight when their only really safe foods were carbs.  This made me realize that I'm in a similar situation in that the only foods I can eat and enjoy are carbs plus I've been on a soft diet for about 4 months, I find cooking and the smell of good makes me very nauseous whereas I can grab a biscuit or bread with no food prep required. Then of course I have to inject my correct insulin to correlate with the carbs. I feel a vicious circle coming on lol.

My sugars are haywire too though I think cos I've been staying away from home cos my father's not well has a lot to do with it. I have no real routine and spend a lot of time driving to hospitals or trying to come home. I hope it's just a blip and that it will settle again soon.


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## ron50

My sugars have settled at a new higher range from 8-10 (120-180) thanks to a combination of symbicort and cyclosporine. I don't know yet if the cyclosporine is working but he has it at the level that he wants it. I will have a test early next month. It is making me very tired. I went and had a skin check yesterday. I had problems when I was on methotrexate but it seems that my suncare regime has been working and I have no new problems. I hope you both get your sugars under control. As for the weight, good luck , I have no solutions... Ron.


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## Mike58

Thanks for the support Liz and Ron,
My glucose seems to be holding steadier using the 12 units plus correction.  My GP increased one of  my blood pressure pill's to 2 a day and the next day I woke up with severe swelling in my legs, ankles, anf feet.  I met with him today and he reduced the amdopiline back to 1 pill per day and added a diuretic.  He also told me that he is now concerned with congestive heart failure because of my uncontrollred blood pressue, shortness of breath that won't go away,  and fatigue.  Oh joy, now I get to add more medicine and a cardiac group onto my list.  I've reduced my contact with my GI for now because I really think he's at a loss of what to do.  He wanted to do a internal ultrasound to pinpoint my pain but I told him no thanks.  My scans have all been coming back "normal" lately so why keep running more tests.  I think I'll just wait till I go to Mayo later this summer. 
 I'll keep you updated.  Thanks for the continued support. 
Mike


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## lizbeth

Yikes Mike, that's a lot to contend with, will you have a follow up with your Dr about the heart issue or what happens next? I'm sorry that you've been given this to contend with, will be thinking about you.


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## ron50

Well after two months of cyclosporine the verdict is in. My protein loss has halved. There was some other news that may or may not be good news. For years my liver function tests always come back with quite a few readings in the red. Since cyclosporine they are all in the black. It appears that whatever problem that was affecting my liver is also auto-immune. The most probable is auto-immune hepatitis. It is not that uncommon even years after chemo. A lot of doctors have told me I probably had fatty liver. My colon cancer surgeon told me I was probably suffering chemically induced hepatitis. My nephrologist was a little coy about my liver results but he did try to convince me to do a short sharp burst of prednisone to help my arthritis. The most common treatment for auto-immune arthritis is a combination of Imuran and prednisone. Call me suspicious but I am wondering if I have been suffering hepatitis for some time. Over the years on the cancer net there were deaths from cirrhosis following auto- immune hepatitis. I am going to put it straight to my neph when I see him in three weeks. I don't like the idea of ever taking pred again but if it saves my liver I guess I can take high bs's for a short time . Had an eye test this week . No problems there. Hope you are all well. Ron.


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## Mike58

I just got out of the hospital after 5 days.  My GP was mostly correct about the heart failure.  I was into heart failure when I saw him at his office last posting.  My wife and I went to Las Vegas for a week and I suffered with the swollen legs and feet the whole time.  Got back last Saturday evening and the pain was so severe that I went to the ER that night.  After multiple tests including an Angiography,  the docs concurred that I did go into heart failure due to my Diabetes.  The good news is I'm still alive.  The bad news is I'm now on more medicine and a heart, diabetic,  and Crohn's diet all at once.  I hope you all have some favorite low sodium, low res, and low carb recipe's for me to try.    :ybatty:


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## Careyearl

Hi:  has been hard to find a diet to follow but I'm looking into the wheat belly diet which will help with both crohns and diabetes.  It has some great recipes.  I attended the wheat belly live and makes sense.  The Dr. That wrote the book is a cardiologist and was started for those with heart conditions.  This way of eating should work for you.

I'm so sorry you are having such a difficult time.


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## Mormor Vicky

Hi!  I was diagnosed with Crohns in 2006 during an emergency resection. I had a fistula to my bladder and when the doctor tried to do a colonoscopy he couldn't even get through my sigmoid. I knew I had Crohns ( my daughter has it also) but the doctor said it was probably diverticulosis. It was until surgery that it was discovered I had Crohns. 6 weeks later I had a very bad reaction to 6MP and ended back I the hospital. It was then I found out I had diabetes. It was steroid induced. Started off on injections but now I have been on only metformin. I'm okay as long I stay away from prednisone. 

It was really tough finding out I had both Crohns and diabetes within 2 months. Balancing the 2 diets really drove me crazy.


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## lizbeth

Mormor Vicky said:


> Hi!  I was diagnosed with Crohns in 2006 during an emergency resection. I had a fistula to my bladder and when the doctor tried to do a colonoscopy he couldn't even get through my sigmoid. I knew I had Crohns ( my daughter has it also) but the doctor said it was probably diverticulosis. It was until surgery that it was discovered I had Crohns. 6 weeks later I had a very bad reaction to 6MP and ended back I the hospital. It was then I found out I had diabetes. It was steroid induced. Started off on injections but now I have been on only metformin. I'm okay as long I stay away from prednisone.
> 
> It was really tough finding out I had both Crohns and diabetes within 2 months. Balancing the 2 diets really drove me crazy.


Welcome to the group .

Though I'm really sorry that you are also living with these difficult to manage diseases.  Also, I'm really sad to hear you have a daughter with crohns, what she is she? How does she manage? 

I think it was the diet aspect that nearly drove me mad when I was newly diagnosed with crohns, I found it all completely overwhelming. 15 months later I just do the best I can but I find no two days are ever the same and my blood sugars are very difficult to control.

How is everyone else doing this week?


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## purpleicedragon

New here.  Just wanted to say hi.  I have type 2 diabetes and was just diagnosed with Crohn's disease.  I am currently just trying to get a handle on the pain and watching what I eat.  My number one priority is to get the Crohn's under control.  Then I will worry about balancing both of them.


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## ron50

Hi, Had a bad week ,doc tried me on fentanyl patches for back pain. Gave me really bad nightmares. have a history of poor reaction to opiates , couldn't have morphine for pain relief after my cancer op. Fentanyl and winter have stirred up my asthma . I'm on two puffs of the symbicort 400 turbohaler of a morning now. It is effecting my sugars. The cyclosporine is holding my protein loss between two and three grams. Does not look like I will reach full remission on it. Hugs to all Ron.


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## lizbeth

purpleicedragon said:


> New here.  Just wanted to say hi.  I have type 2 diabetes and was just diagnosed with Crohn's disease.  I am currently just trying to get a handle on the pain and watching what I eat.  My number one priority is to get the Crohn's under control.  Then I will worry about balancing both of them.


Hello and welcome . I'm sorry to hear your been diagnosed with crohns especially already having diabetes, it's a bit of a miserable juggling act but I'm sure you will get there, good luck, please let us know how you get on.

I didn't realise how long is been since I've been on here, life has been rather harsh these last 2 months my father-in-law passed away very suddenly on Apr 3rd and my dad passed away on May 8th exactly 5 years and 1 hour after mum. As you can imagine it's been very difficult to manage my health and my blood sugars have been terrible, luckily my tummy issues were manageable. I'm having to re-adjust to life and have a lot more time than I did as I used to spend half the week staying at my dad's so that I could visit him in hospital, he'd been in since Jan 20th. I'm still undiagnosed and have seen a new Dr for a 2nd opinion who has ordered a feacal elastase test and a white cell scan, just had mri of my knees and am waiting for shoulder surgery.....Oh the joys.

Sorry for having a moan, guess I'm just a bit fed up with it all.


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## Vesabi

Hi. New at this forum as well. Really sorry to hear of your different difficulties. 
I´m a 47 year old Swede diagnosed with Crohns 22 years ago, had two major surgeries in the mid 90´s - one re removal of colon (no stomy though), diagnosed with diabetes type 2 one year ago, and through the years "gathering lots of experience" of different "related" diseases like pancreatits, osteonecrosis, joint pains, high blood pressure, multiple kidney stones, hernias, ileuses, ulcers, etc. etc. And through the years I´ve tried pretty much most of the available treatments and medicines for the Crohns.

BUT, this said I also want to say that I´m a father of three teens, engaged since 26 years, working as a high executive (Chief Controller) at a global company in the Space Industry, training 4-6 days a week (weights/gym & running), eating & drinking pretty much everything (but in a healthy balanced way (most of the time anyway ;-)), etc. Feeling good most of the time.

For the diabetes (which I don´t think so much about) I take a Insulin-shot once a day at bedtime (takes Insulin instead of meds like Metformin cause they don´t work good when lacking a colon..) and for Crohns right now Remicade every six weeks (since many years) and Pentasa and Flagyl. That´s it. (Best thing for diminishing Crohn-problems was quit smoking three years a go though after almost thirty years.. Hate "morality" but that was really the case.)

Sure I have had many many tough times, and I sure don´t want to diminish any problems we experience suffering from these diseases - but I want to share that´s it is possible to overcome a lot and to live very very good lives regardless. After shitty times better times often come, and when one treatment maybe doesn´t work maybe another will, and sometimes just time makes things less rough.

Maybe I would have "puked" at these kind of positive postings when I was younger and more in to the real struggles - but at the same time if I was diagnosed today and was looking in to Internet for information I would have been quite scared from all the storys there. 

Hang in there yáll!


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## lizbeth

Hello and welcome .

I'm sorry for all your health issues but also wanted to thank you for your positive words, you appear to have a very positive outlook and attitude and I believe that helps tremendously when dealing with so many issues, it's refreshing to hear good stuff.

I too have been dealing with multiple health problems, most recently having a second shoulder impingement diagnosed for which I need surgery (again), it's scared me a lot cos I know what's in front of me and it's not very nice lol, on top of that I'm dealing with the loss of both my father and father-in-law last month . I can see how easy it would be to lie down and let it all get on top of me but I don't live my life like that and prefer to believe I could be worse and many people are and I actually feel lucky, (in a strange way). I think life is what you make it, that's what keeps me going....

How is everyone else doing these days?


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## ron50

Hi Everyone,
  I wonder how the healthy people are going. I guess we will never know. I wish I could wave a magic wand and take away all of our pain and suffering. If I were to put anything at the top of my list of problems it would have to be the pain. I can put up with the bathroom issues ,the asthma ,the diabetes which does not cause any symptoms except perhaps high bp. It is the pain from the ankylosing spondylitis and psoriatic arthritis that effect me most, When pain comes and goes at least you get a break at times. When it is constant it is seriously life effecting. Normally I would never have agreed to try fentanyl patches. I can put up with nightmares but not when they don't go away when you wake up. After I used the last of the five patches I got a new script. I didn't use it .I left the last patch on for nearly two weeks . It gave me just enough of the med to not have serious withdrawal. My gp has not put me on oxycodone. It is controlled release and so far it has alleviated the pain and caused no side effects. I will stay on the lowest dose . At this level of pain I can get by. I have tried a longer walk ,not a good Idea the pain breaks thru. Ron.


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## lizbeth

Hi everyone, it's been a while and just wondered how everyone was doing?


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## ron50

Hi Lisbeth. Have been having blood pressure issues . For a month I have been hovering in the 190/120 range. We think it is from pain flares from psoriatic arthritis and spondylitis. My doc upped my targin dose and for the two days since I have been 120/80. The cyclosporine has made my gums grow so I have hardly been eating anything because of the pain. As a result my sugars are a constant 5.8. Three mos ago I was in the 10.s. How have you been. Deaths in the family can put a terrible strain on health issues. Hugs ron.


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## lizbeth

Thanks Ron. Sounds like you've still got lots going on .

To be honest I've been struggling with the loss of my dad, I spent so much time looking after him that I couldn't cope with all the time I had to fill and would wander aimlessly around the house or potter around the garden,I got very anti-social too and just didn't want to talk to anyone unless I really had to, this didn't include my immediate family just everyone else lol, it's improving a bit. 

Regarding my health, well, I'm still in pain everyday, still waiting for a white cell scan , was back in casualty 2 weeks ago cos I couldn't get the pain under control, my symptoms are increasing again but my drs still won't give me any treatment and I have no appointment to see anyone, it's all very frustrating. My sugars are awful though I've not really worried very much, didn't have the ability to but I'm trying very hard now to gain some control back. If I could just get some answers it would make such a difference, going in 2 weeks to find out what's wrong with my knees and hopefully rule out the need for surgery.


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## Mike58

Hi all,
It's been a busy spring and summer this year.  I've been in and out of the hospital 4 times since March.   Congestive heart failure, undiagnosed high fever with lung issues, another SBO,  and finally, picked up an infection in Yellowstone Park in July and came down with severe infectious diarrhea that caused me to pass out twice on the trip home.  My GI docs urged me to get home ASAP as they were very worried about infection in the small bowel.  Got back to Denver and went right into the ER.  Spent a week in the PCU living on ice chips and 2 IV's to rehydrate me.  
Enough is enough and so I scheduled a visit to The Mayo Clinic in October.   I'm really hoping they can determine the cause of some of my Crohn's issues.  One doctor theorized that the pain I feel in my left abdomen could br adhesions attached to the small bowel and it is affecting the motility of the bowel.  The other theory is a Carcinoid tumor. 
I'll keep blogging while I'm down in Scottsdale.
Hope you all take care and stay vertical,
Mike:thumleft:


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## julie mounsey

Hello everyone my name is Julie im new to the group.  I have had Crohn's disease for 14 years had one resection and im on 1g Pentasa mesazaline 150 azathioprine a day and 80mg Humira once a fortnight plus I also have type 2 diabetes and take Humalin M3 insulin once a day in the morning when everything is fine and whenever i need it when im ill.

Ive had diebetes for the last 16 months after a stay in hospital with my Crohn's it was called steroid induced diebetes to begin with i was very sick on lots of iv meds and isolated in aroom of my own which was awful docs thought things would balance out once i came of steriods but unfortunately they didnt and i was told thats it now i will always have diebetes and i will always be on insulin.  Ive adapted really well but i must say i do find this diebetes lark hard work i thougnt the Crohn's was bad enough but like you all say you deal with one of them and then the other plays up, I notice a lot of you mention your diets well i love food and i eat what i want lol cant eat much dairy products but ido have them just know my limits and you can forget curries its the rich herbs and spices but i can eat chilli in foods strange its all trial and error isnt it.


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## lizbeth

Hi Julie, sorry it took so long to reply, just wanted to welcome you to the group but also dry how sorry I am that you now have to contend with diabetes too. 

I'm the opposite of you in that I've handled my diabetes well, it was a shock but at the time my girls were very little and I knew I needed to look after myself so that I would be around for a long time for them. I had a "lovely" Dr tell me that I had just lost ten years off my life and that if I didn't look after myself I would have a heart attack by the time I was 35 (I no longer see that Dr). I had only just been diagnosed and didn't know any better then so he scared me, that was 19 years ago and I know more now. I'm 45 now and so far have only minor complications from my diabetes (touching wood). 

I haven't handled possibly having crohns so well, I find it very difficult to live with even though my symptoms are tame compared to others, I haven't been officially diagnosed yet bc my tests have been inconclusive so far, I have found crohns to be all consuming and I have to stick to a low residue diet cos if I deviate I suffer. Maybe it's bc it's a relatively new condition that I don't manage so well? I've just been diagnosed with fibromyalgia too so that might explain why my pain is so extreme, I guess only time will tell.

Anyway, once again welcome, please feel free to rant or vent cos that's what we're here for .


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## julie mounsey

Hi Lizbeth thank you for getting back to me, one thing that gets me is i keep hearing from people on here about their diets this is something ive never thought of i know there are certain foods that i cant eat a lot of such as cheese, curries, fatty things such as sausage, bacon but generally i eat most things i have noticed just recently in the last few months about food but i would like to know more about this side of things. I find that usually a plain diet with simple foods like potatoe, chicken, fish seems to be better than spicey foods but i do need my food lol because im in a vicious circle if you eat your on the loo and if you dont your sugars drop too much cant win ha ha


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## lizbeth

I do find trying to manage the 2 diets very difficult and boring at times, my best advice is check out the low residue info in the search up above, it will give you the info you need, you are basically doing it. Low residue means avoiding foods that are spicy, fatty, contain while grains and seeds, nuts, sweetcorn, carbonated drinks, alcohol, caffeine and avoiding certain fruit and veg and something else that I can't remember. Then take away everything you need to avoid bc of the diabetes, it doesn't leave a lot but once you've got that sorted you can maybe introduce some other stuff. It's very much trial and error and very individual.


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## jamminjodi

:sign0144:
Please bear with me...  I know I'm bouncing all over, its LATE I'm sleepy, and if I don't post it as is, I probably never will...  But, I need to rant/vent!!!!  When I was like about 16 -17yrs. old, I was diagnosed with colitis, and or IBS.  About 13 yrs ago, I got food poisoning, and the symptoms continued for 6 mos. before finally going to a Dr. and was diagnosed as having Crohns. This was from a Dr. in Tx. he showed me the pics.... ewww!  3 yrs later, moved back to Calif. and my Dr says it's UC, and no way could it have been crohn's....  My father, (I hardly knew him) died at age 52 from colon cancer. I will be 57 in a few wks. I know nothing more about his illnesses leading up to the cancer.  My Mother told me when he was in the service, that he got paid for doing drug research (trial/experimental)  13 yrs dealing with this and Diabetes....  I am SO sick and tired of being sick and tired, and so tired of filling my pill containers!  I take like 12 pills in the A.M and about 7 or so in the P.M. PLUS... in between I have to take insulin b/4 every meal, plus another kind each morn and bedtime, Plus I have to  drink  cholestyramine powder 3x a day.  (past yr. my diabetes is uncontrolled mostly due to steroids and infections which raises my sugars.) Foods ok for diabetes, is big no-no for crohn's and visa versa!  I get so depressed and tired of the constant battle. These past 6 mos, I find I sleep for DAYS at a time, and sometimes not even caring if i'm taking my meds. (If the pill container is all set up, I'll usually take them and go back to sleep) How is it a person can actually SLEEP for 3 days at a time, get up for a day or 2, and then back to sleep. Not just lay in bed, but actually sleep!
This is the worse flare I've ever had. So much pain and discomfort, So much acids in my diarrhea that it leaves welts and bad rash and the pain is EXCRUCIATING beyond belief! They said its inevitable, that if not now, than soon, they'll have to remove my colon because of how long i've had this and b/4 cancer shows up!  SOMETIMES I feel like I'd rather die now and be done with it than to live life with a colostomy bag! I had a pretty good life!  Other times, I'm happy and content....


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## ron50

Hi Jodi,
              Giant cyber hug. I am sorry that you have had to go and continue to go thru so much. You started so young . You just never seem to catch a break with this disease. My brother has had proctitis and ulcerative colitis for close to fifty years. He is one of the rare and lucky ones who has been able to control it all this time with sulfasalazine and the odd hit of prednisone. He is 71 this year and has had an amazingly good life despite uc. They never dxed me with Crohn's or uc it was always just referred to as irritable bowel. I don't know how many times I was dxed with peptic and duodenal ulcers. I lost my gall bldder at one stage when a gallstone blocked off my pancreatic duct. I suffered for many years with bile salt malabsorption and took cholestramine daily for many years. In 1998 I had a scope and was dxed with stage3c colon cancer into six lymph nodes. I had 48 sessions of chemo over a year. I am still paying for that. I have grade two ankylosing spondylitis with fusions and pars fractures , psoriatic arthritis , osteo arthritis , osteo perosis and type two diabetes from steroid treatment, severe peripheral neuropathy and an unknown auto- immune disease of the kidneys. I lose up to seven grams of protein a day thru my urine, I am on cyclosporine twice a day, it helps to keep the protein loss in check. I take 80mg of oxycodone//40 mg of naloxone a day for pain. Two doses am and pm and I have to take two dulcolax and two coloxyl with each targin tablet to overcome opiate induced constipation and to restart colon motility. At least I don't need cholestrymine any more. 
          Life has become a tight rope ,easy to fall off , hard to get back on. A good day is one where nothing really bad happens. I have trouble with sleep but mine is due to apnea. My cpap machine helps me thru the night. In the last couple of years I have had to go for heart check ups. I suffer around 11,000 premature ventricular and atrial beats a day plus several runs of tachycardia. All I can offer is my condolences and to let you know you are not alone. I do know how you feel. This monthy I end year sixteen of cancer survival and start year seventeen. when I was dxed I thought at last an end to my suffering , but no I had to go and survive . Such is life . Hugs again Ron.


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## jamminjodi

*didn't mean to post...*

skip


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## kdjohnson

So.. I can type this now that I can see past thru my tears again. I had no idea that there were other people in my boat. I want to hug every person in this group!
I was dx diabetic in 98. That was hard enough, then in 07 - crohns. I've been lucky enough to not have been subject to all the surgeries that some other crohns patients have, but things are going downhill n my brakes r shot.. My BG levels r chronically high (a diabetic friend is helping w this tho) and I've gone from the gut wrenching pain 2 now more diarrheal episodes that last 4 days. I'm a 30 year old man who has 2 wear diapers. I have no real support. I'm homeless. I find it difficult 2 WANT 2 do anything at all.. Its a rollercoaster, not only w my BG but w my giveadamn as well. I have 2 many issues 2 even talk about n I think that may b a big part of the problem.. I need a serious comb through n overhaul! Lol..?! I've got a lesion/ulcer? In my cheek that has been burst thru to the outside of my mouth n leaking out 4 months now.. Tried antibiotics, still there. This is probably connected to my teeth which have been falling apart n rotting from the inside since shortly after the crohns dx.. I keep getting minor skin injuries from God only knows where, that heal super slow. My vision is getting worse. I get lightheaded all the time. My balance is garbage. I'm 6 foot tall n only 135 pounds.. (Tho that's an improvement over 119!) I'm just lost.. I don't know what else 2 say right now, just happy 2 have found y'all!


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## Catherine

Bumping support group.

My family is dealing with both Crohn's and Diabetes.  Just not in the same person.

My DD aged 20 was dx with Crohn's aged 16.

At moment my DH Diabetes is causing us the most issues. He is type 2 but on insulin.

Thank for allowing me to join the group.


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## Cross-stitch gal

I was just diagnosed as pre-diabetic this year.  As shown, I'm on metformin but am doing alright for the moment.


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## ron50

G'day CSG Good luck with the type two. Not ideal but it seems to be manageable if you stick to doing the right things by yourself Hugs. Ron.
             Hi Catherine I hope things level out for you, sometimes it feels like we are living in a yo yo.   My BG is all over the place and my BP is even crazier. My nephrologist does not believe my blood pressure problems are true blood pressure . It just varies too much and too often , he believes that it is hypoalgesia from being on high dose oxycodone for too long. He wants me off it but it is going to take a long time. They are suggesting a drop of 5mg on afternoon and alternating with morning dose every two weeks . That is a long taper but apparently it can get very unpleasant if I go too fast. Ron.


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## Catherine

Hi Ron,

Have you got a diabetes specialist?  If not I look at getting one it best thing we ever did.

DH 3 monthly blood test has been sitting at over 11 for years.  The GP wouldn't refer as only people/individual on insulin need a specialist.

12 months under a specialist and last test was 7.9.  He on a ton of medication but the improvement in his health is amazing.

He takes, Diabex XR 100mg; NovoMix 30 (90 units per day) & Forxiga 10mg and these are only for diabetes.


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## Catherine

Cross-stitch gal said:


> I was just diagnosed as pre-diabetic this year.  As shown, I'm on metformin but am doing alright for the moment.


Please watch your vitamin b12 levels.  Metformin-induced vitamin b12 deficiency is a know side effect after long term use.  It is also know to cause Peripheral Neuropathy.


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## scottsma

I was dx'd borderline after my annual check up.I haven't been prescribed any thing.
I'm trying to be very careful with my diet,especially after losing my gallbladder a couple of months ago.Looks like they're leaving it to me to sort it out.It'll be great if my levels have dropped at my next check up.I feel ok,(mostly)


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## ron50

Hi Catherine, it is funny ,but none of my doctors including my nephrologist worry about my diabetes. My history blood counts have for years been 7 or just under. My doctors know I am compliant. I take my 1000 mg of metformin every day without fail and I live by the glycemic index . If ever I eat anything a little high on gi I always combine it with something low. I don't drink or smoke and never drink softdrinks and the like. I eat a lot of fish and pretty well stick to a Mediterranean diet. My downfalls are mainly the medicines I take, some of them can cause problems with the diabetes. Opiates are one and cyclosporine is another. Any time I am required to take steroids I try to get out of it. I must admit to not taking my asthma preventative because it is steroid based , and I soon hope to be off the Targin (oxycodone). I know that with all of our problems we are walking a tightrope so I try to work on my balance. Hugs Ron.


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## Cross-stitch gal

Catherine said:


> Please watch your vitamin b12 levels.  Metformin-induced vitamin b12 deficiency is a know side effect after long term use.  It is also know to cause Peripheral Neuropathy.


I'll ask about that next time I'm in.  Thank you!


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## Catherine

Ron50,

Your diabetes drug metformin has been linked to peripheral neuropathy with long term use.
A diabetics specialist may have be able to help you access drugs which are more peripheral neuropathy friendly.

My husband's neuropathy is now stable since going on to other diabetes drugs and starting vitamin b12.

http://www.diabetesselfmanagement.com/blog/metformin-and-risk-for-vitamin-b12-deficiency/

http://care.diabetesjournals.org/content/35/2/327.full

http://www.jdmdonline.com/content/12/1/17


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## ron50

I have heard about the link with metformin and neuropathy. My neuropathy was dxed as moderate to severe by a neurologist some years ago. He was aware that I was on  metformin and that I had well controlled type two diabetes. He refused to speculate on what was causing the neuropathy and said because he did not know what caused it he could not treat it. That cost me $500.00 for nothing. Unfortunately I react to nearly all medications ,either well or poorly. My nephrologist is amazed at how well my proteinurea has responded to what he considers a too low dose of cyclosporine. I have gone from 7 grams a day to around .6 of a gram and continue to improve. He hit me with a short sharp dose of prednisone last year. All of my liver functions that had been in the red suddenly were in the black. He said it indicated that I suffer from mild to moderate auto-immune hepatitis from all of the various meds I take. He is loath to alter my overall medications on the principal better the devil you know. Since he put me on a low dose of nsaid my bp dropped yesterday to 103/75. It looks like it has been pain related and that oxycodone the likely cause. I saw my gp yesterday and he gave me scripts with enough different dose sizes to start my taper. I am waiting to see an endochronologist so that I can resume hormone therapy. My testosterone reading had dropped to 5.2 of a morning , normal is 8-18. After two three monthly shots they changed the rules and now require me to see an endo before I can resume treatment. The waiting list Is huge. I wet my bed last night. My night sweats were so bad I had to change the bed clothes and pajamas, they were drenched. It appears that I just have too many problems. Ron.


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## Catherine

An endochronologist is the specialist that manages diabetes.


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## DougUte

Hi everybody. 

I have had Crohns for years. Today I was diagnosed with type 2 diabetes. My A1C level is 8.1. I don't know much about diabetes but I need to take time and learn.


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## scottsma

Hi Doug,that's tough on top of everything else.
I'm only borderline and am trying to be very careful with carbs and sweet stuff in general,and hope my next blood test shows an improvement.Best wishes.


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## ron50

sorry to hear it Doug. I guess that metabolic syndrome is about as good a description for what we have as any. It seems that we are all facing similar breakdowns in our Gi and endocrine systems. We must have been a wicked mob of dudes and dudettes in a previous life. Sometimes in down moments I have asked my neph what he thinks will finally take me out. He always has the same answer ",Stuffed if I know Ron, stuffed if I know". I may just ask them to chisel that on my headstone. Wishing you all well with your various challenges. Ron.


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## DougUte

scottsma said:


> Hi Doug,that's tough on top of everything else.
> I'm only borderline and am trying to be very careful with carbs and sweet stuff in general,and hope my next blood test shows an improvement.Best wishes.


Hi Carol. 

I hope you have improvement also. Because of all the meds I already take, and because my GP informed me that metformin can cause intestinal problems, I am going to try to attack this through diet. Lower carb intake and the sweet stuff as much as possible. They are arranging an appointment with a dietician. I should hear from them today on when that will be scheduled. 

The question I have is this. Should I eat for Diabetes or Crohn's? Or is there some middle of the road diet I should go for.


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## fuzzy butterfly

I am having "I told you I was ill" on my gravestone lol  
Only got crohns no diabetes (as yet but who knows usualy if its going free il have it lol ) 
Love to all x


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## ron50

Good question Doug. What do you eat and take. As Catherine mentioned metformin has been linked to neuropathy which I have. It has long been considered a drug of interest in stopping colon cancer recurrence. I am nearly at the end of year 17 ex stage 3c colon cancer. I have nephrotic syndrome of the kidneys , cause unknown but everything, food and medicine seems to affect them. I have high uric acid levels and high cholesterol levels. I have type two diabetes. I suffer mild to moderate auto-immune hepatitis from all the meds I am on. Because I take cyclosporine and previously methotrexate I have had problems with skin cancers. My skin doctor ha suggested six monthly reviews now. I have low testosterone but there is a long waiting list to see an endo. I spent all of my savings on specialists so I can't go private. I had a meltdown last night. their intensity is getting scary and lasting longer. I have asthma and severe psoriatic arthritis. The cyclosporine has helped with my kidneys but not the arthritis. I don't think that my body can take another medication. It has already rebelled over the oxycodone. In summary I have to eat a low salt low cholesterol low purine low sugar low fat diet that does not provoke arthritis. I have asked about surgical intervention with my back for pain. My neph just laughed and said we are not going there. I have only half a colon and it is still always irritable , my upper gi tract is no better. The  last bad endoscopy I had my gi initially dxed stomach cancer then changed to major ulceration after a biopsy. No hellico bacter. I have to take two 40 mg somac a day to keep that in check. Any wonder my neph says stuffed if I know. He gives me the same answer to "why am I still alive"?   Ron.


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## Catherine

Hi Ron50

A couple neuropathy treatment for you to look into.

Zostri, it a cream that you buy over the counter.  You need apply 3-4 times per day.  Active ingredient Capsaicin.

Magnesium supplement.


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## ron50

Thanks Catherine  I take magnesium and d3 as well as fishoil. I take the magnesium mainly for cramps of a night. I get some really bad ones. I suspect it is as a result of the frusemide diurectic that I take for oedema and some of the meds that leach some of the minerals. One glimmer of hope is that I have actually been given an appointment with and endo on the23 rd of November. Finally. I am down to 35 mg morning and night on the slow journey off oxycodone. My night sweats and hot flushes are getting worse and I think altering the dose of oxycodone has tipped me into the constipation side of the cycle again. I find it worse to deal with than diahorreah. I saw my neph this week. He is cautiously optimistic that the Naprosyn 750 has not caused problems with my kidneys so far but he is keeping a close watch on it. It has lessened the pain  particularly if I have a nap when I get home from work. When I get up after the nap at least I can walk now. A few weeks ago I was finding I would have to stagger around for some time before my legs would work properly. They suspected hypo algesia from the oxycodone. Nothing much changes in life ,it always seems to be one step forward and two back. 
               Out of interest my neph and I had a discussion about the drug levamisole which was one of the chemo agents. It is banned since 2001 for sometimes fatal side effects. It is most often used now by illicit drug dealers to cut cocaine. Apparently it enhances the drugs effect. It also causes some rare and terrible diseases. He said they are actually feeding it to rats to try to cause some of theses diseases so they can study them and try to find a treatment. Ron.


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## fuzzy butterfly

Hi i have heard that chamomile tea is good for diabetes or at least the side issues that it can cause. May be worth a try n it cant do any harm if it does no good. Also helpful for sleep to if you struggle to sleep well.  hope this is helpful info x


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## JennyT

So cool to see Im not the only one. Juggling what I need to to eat keeping both diseases at bay is like trying to herd cats. Its the diabetes that loses out most times cos you haveta eat (bad me I know) Sometimes I just think well - you have to die of something. Having said that, I'm quite cheery usually (except during a flare) so its not that Im morose about kicking the bucket - Id just like to do it in style


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## fuzzy butterfly

Hi JennyT i dont have diabetes but some of my friends on here do. It can be a juggling act with food as they need conflicting foods to help u feel better for each disease . Guess u just have to do your best to help both but sometimes it will affect one or the other .. Keep smiling n best wishes


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## DougUte

Just thought I would update everyone with what has been going on. After my GP tod me I have diabetes last month, I decided to attack the diabetes with diet and exercise. I do not want to have to take Metformin, ever. My Crohn's is in remission and I want it to stay that way. There is too much chance Metformin will cause a flare. 

Anyway, when I started my blood gloucose was 270, and  my A1C was 10.3. Not good numbers. Within a week of my new diet, which is a simple diet 1 carb per meal, limited to 45 grams daily. my blood gloucose was in the 130's. I am now having fasting gloucose readings in the 110's. I also have kept my Crohn's at bay while eating more vegetables, etc.. 

One thing that has happened is vision problems. I have found that when a person has such a large drop in blood gloucose, that it causes the arteries in the eyes to contract and dialate, causing blurry vision. Fortunately this is a temporary condition. I have an appointment with the opthamologist next week to see what he thinks, but I hope the blurry vision is gone by then. 

Hope everyone has good results with this awful combination of diseases.


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## fuzzy butterfly

Doug thats brilliant well done mate. Keep up the good work.lots of love n support hugs..hope the eye problem does go quickly.


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## ron50

Good luck with the eyes Doug, they are the area that worries me the most. What concerns me is how long we have been insulin resistant before we were finally dxed with type two and how much damage has high blood insulin been causing in that time. I seem to have some problems like hammer toes and severe neuropathy that have been there for a lot longer than the supposed onset of my type two diabetes. ron.


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## DougUte

ron50 said:


> Good luck with the eyes Doug, they are the area that worries me the most. What concerns me is how long we have been insulin resistant before we were finally dxed with type two and how much damage has high blood insulin been causing in that time. I seem to have some problems like hammer toes and severe neuropathy that have been there for a lot longer than the supposed onset of my type two diabetes. ron.


The eyes are really giving me problems. When I wear my glasses, which is most of the time, I now find I cannot see clearly at distance unless i look through my bifocal. My right eye is much worse than the left, (neither are good right now). I don't think it is iritis because I don't have the eye pain or sensitivity to light. I definitely have the blurry vision though, and I am sure my opthamologist will check for it, because I have Crohn's.


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## Catherine

Most eye problems related to diabetes are treatable as long as they caught early.

DH has had both eye operated on due to bleeding.


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## SandyUte

Well, I decided to join this thread, tho not the one with an IBD (but sometimes I wonder), just IBS (and many other ailments).  After several months of nausea in addition to my IBS/D, which seemed to be getting worse, I saw our GI yesterday (shared with my crohnie hubby, DougUte) only to find out that diabetes can not only cause nerve problems in the periphery, but also in the small intestines. This can, in turn, leave things sitting there too long which can cause infections, that can also, in turn, sit in there for months.  Just what all you IBDers with diabetes really want to know, huh? (NOT!) I'm now being put on Flagyl to treat any underlying infection.  I don't know about all of you, but I'm tired of dealing with intestinal issues, and I don't even have an IBD. I'm also tired of taking meds, all these chemicals I put in my body can't be good for the kidneys and liver.  Grrr. Just had to gripe.


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## fuzzy butterfly

Sandy love n hugs to you both. I hate the meds side too.  Hardly ever took one before crohns now i rattle with them..


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## DougUte

My vision problems will get better in a few days!  With new glasses! My opthamologist determined that I do not have diabetic retinopathy. (YAY!) 

Since my blood gloucose levels have bottomed out, he gave me a new prescription for glasses. I should have them is a few days.


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## ron50

I am glad to hear it Doug , no eye problems and lowering bg is good. Way to go. Ron
   saw my endo chronologist yesterday. No good news he does not know why my testosterone is low and he really is not sure if hormone shots are the way to go. He has warned me that if I go that road , two more three monthly shots and there is no return. I will be on them for life. He has left it entirely up to me which really sucks ,,,what the hell do I know. I suggested that perhaps I should wait another eight months, that will be twelve months since my last hormone blood test and have another test to see what my levels are.. He said that everything about my health seems to point to auto-immune problems and he said that there really are not many experts in the auto-immune field. It's all about I think and lets try. I asked him if he would consider giving me a shot of he green stuff they give old dogs. He just smiled and said he is a Hindu and it is against his religion... Ron.


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## fuzzy butterfly

DougUte said:


> My vision problems will get better in a few days!  With new glasses! My opthamologist determined that I do not have diabetic retinopathy. (YAY!)
> 
> Since my blood gloucose levels have bottomed out, he gave me a new prescription for glasses. I should have them is a few days.


Yay!!! DOUG  so glad to hear that mate. Heres to the new specs doing the job.


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## fuzzy butterfly

Oh Ron what a bugger pal. I thought docs were supposed to make the decisions ??. You may well be right on your thinking tho, and NO you CANT have the green stuff Ron. Its not allowed coz we need you here mate


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## scottsma

Just read in the daily paper that a handful of walnuts daily can be helpful in keeping diabetes at bay.(I'm borderline)So I'm going to stock up tomorrow..........I like nuts,this forum has more than it's fair share.:rof:
I apologise to those of you who regard themselves as sane.:smile:


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## fuzzy butterfly

Carol if anyone here does.. they need help fast


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## ron50

Not true girls. For seventeen years all those crazy doctors have been trying to kill me. It is only the sane influence of you guys that has saved me or as carol said we all need a handful of nuts every day. Ron.


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## fuzzy butterfly

Maybe its the nuts that keep us going Ron


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## ron50

Undoubtedly so Mandy, Hugs Ron.


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## fuzzy butterfly

Hugs back at you love


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## DougUte

Walnuts. Hmm.


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## DougUte

Hi! Where is everyone? About 2 months ago I was put on Budesonide to stop a flare. Since then my blood sugar has raised quite a bit. This morning my fasting blood sugar was 197, and that has happened quite often. Today I found on the internet that diabetics should not take budesonide. Could that med be causing my blood sugar spikes?


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## Cross-stitch gal

Yes, I would say that most likely it does spike it.  Here is some info I found on prednisone.  Being a common steriod, I would think budesonide would be the same.  I hope this helps.

http://www.copdsupport.ie/copd-support-group/copd-medication/all-about-prednisone-steroids


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## scottsma

DougUte said:


> Walnuts. Hmm.


I posted the walnut theory last year,and every day since have had a small handful.At my annual check-up my level was back to normal.Walnuts are well documented to aid diabetes....I have lost weight though,so maybe that was also a factor.


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## Cross-stitch gal

Every year we have to go through certain tests before signing up for the next years medical insurance.  One of the tests are blood sugar.  I happened to look at my past tests and saw that my blood sugar counts have always been fairly high.  But, last year  once I started taking metformin and stopped eating sugary items my test was lower than it ever had been.


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## ron50

I had a serious run in with Oedeema a couple of months back. My neph checked me and said the fluid was nearly up to mid thigh and my lungs were also filling.. He did an echo of my heart , some leaky valves but not congestive heart failure . He did echos of my liver pancreas and kidneys. No nasties and no ascites. My protein loss and nephrotic syndrome is being held in check by cyclosporine , He asked me to take 5mg daily of prednisone till further notice. My liver functions that were in the red returned to the black and I was controlling my oedema with double diuretics and a litre a day fluid restrictions.. I took myself off the pred last week. By our method in Australia bs of 5.8 is normal . Mine suddenly shot up into the 10-15 range. I was not eating anything naughty and was still taking my 1000 mg of metformin a day. Prednisone is my kryptonite. I am going to have words with my neph when I next see him , he should know better , long term high dose pred is what tipped me in to type diabetes at the start. Ron.


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## Catherine

Sorry to hear Ron.  Is medformin your only med .  15 doesn't sound good.


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## ron50

Yes Catherine I have been on it for several years. two weeks before he put me on pred and he stressed it was a low dose of 5mg my blood sugars had been down as low as 5.7 and 5.8 . He proved his point with the pred . He suspects that I have at least mild and perhaps moderate auto-immune hepatitis. All but one of my liver functions dropped from the red into the black. I am being super careful with what I eat but it has taken weeks to get it below 8 . I finally got to 7.9 this morning. They did a history blood test last week . I will see next week if it has risen at all. I hate steroids , even the asthma preventative puts my sugars up. Ron.PS they still have no idea what is causing the oedema.


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## DougUte

I am having the worst flare since my surgery in 2010. Becuase I voiced concerns over going on Budesonide because it raises my blood sugar levels, I was put on Flagyl not very long ago. It has now run its course and did nothing for my flare. So today I get to start Budesonide again. Last time Budesonide caused problems for my diabetes. I have been controlling my Blood Sugar levels by diet. Should I see my GP and see about going on metformin or some other med?


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## ron50

It seems to work well Doug. There don't seem to be many side effects tho some people suffer an upset stomach. If meds effect me any place it is certainly my digestive tract and I have had no problems with metformin. I really don't think that any steroid and diabetes go togeather. Ron.


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## Cross-stitch gal

On Thursday I had my yearly check up and they took my blood to check my sugar.  The results came back and they called me on Sunday with the results.  My A1C was in the 50's!  They pulled me off the Metformin and told me that I'm *not* Diabetic.  Haven't adjusted my signature yet, but thought you guys might like to know.

Now pending my favorite test to go through...Colonoscopy.  Yuk!!!


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## DougUte

I did call my GP and he prescribed Glymperide. He did not prescribe metformin because it can trigger GI issues. The course corresponds to my 3 month course of budesonide. The blood sugar is under decent control.


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## ron50

The prednisone tho no longer being taken is still causing problems with my sugar. last week I did a day of tests. I take 500 mg of metformin at breakfast and dinner. At 6.30 am my fasting reading was 150. Two hours later it was 201. At three hours it was 184. At five hours it was 134. After dinner it was 192 and my last reading three hours after dinner it was 144. Fasting the next morning was around 140.  I also did a 24 hr fast just drinking water. My last meal was at 7.30 pm on 1/09. I took 500 mg of metformin controlled release at 10.30pm 1/09. I took 500 mg of metformin at 8.50 am 2/09. My fasting level at 8.30 am 2/9 was 156 at 10.50 am fasting still 135. At 12.50 pm still fasting  119.  At 2.50 pm 107 at 4.50 pm 102 , 6.50 pm 102. 7.30 pm 102.   So it took two metformin to go from 156 down to 102 with no food at all .My a1.c is 117. I don't understand that because my all day test eating low gi food never got below 134 so I have no idea where the 117 comes from. I read up on the  a1c test and they said that kidney and liver problems could give in correct results.. When I see my gp next I will ask to have a glucose tolerance test, I haven't had one for around 18 years... Ron.


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## Catherine

We are still working on DH glucose levels.  Now getting some 3.8's, having to eat in to get levels up before bed.

Here is no rhyme or reason.


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## SandyUte

Catherine, illness can affect levels also (as can other things). You might want to start keeping a diary of not only levels, but exercise, what you ate and when, and even sleep and how you feel day to day. It's a pain, I know, but I found my mixed levels were greatly affected by how I felt, illnesses at the time, when my levels fluctuated. Also, many meds, incl. over the counter, can greatly affect levels, esp. steroids. I hope this can give you some answers.


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