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03-22-2013, 12:13 AM   #1
lizbeth
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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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03-22-2013, 11:32 PM   #2
carolhew
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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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Currently on: Remicade 10mg/kg every 8 weeks and azathioprine 150 mg daily
Previously on: Entocort (budesonide), prednisone, Pentasa and Humira
Diagnosed: June of 2011 with Crohn's in the terminal ileum.
January 2012: stricture found in terminal ileum, balloon dilation
Remission as of January 2014!
03-23-2013, 10:01 AM   #3
lizbeth
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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.
03-26-2013, 01:58 AM   #4
carolhew
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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.
03-30-2013, 03:03 AM   #5
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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.
03-31-2013, 07:02 AM   #6
lizbeth
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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
03-31-2013, 07:13 AM   #7
carolhew
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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.
03-31-2013, 07:51 AM   #8
lizbeth
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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.
03-31-2013, 10:13 AM   #9
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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.
04-01-2013, 06:49 AM   #10
lizbeth
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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

Take care.
04-02-2013, 04:34 AM   #11
carolhew
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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.
04-02-2013, 08:06 AM   #12
lizbeth
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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 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.

My GP said take it one day at a time and that's all I can do. Take care everyone.
04-02-2013, 10:19 AM   #13
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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
04-03-2013, 07:24 AM   #14
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Yeah it would be lovely if more of those days happened I'm ot feeling too bad today, how are you all today?
04-03-2013, 09:58 AM   #15
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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 ;-)
04-04-2013, 04:01 AM   #16
carolhew
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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.
04-04-2013, 06:35 AM   #17
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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.
04-04-2013, 07:05 AM   #18
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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.
04-04-2013, 08:16 AM   #19
Karen
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I hope that it is ok that I come into this group ... why do I ask ? 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 !!!
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04-04-2013, 10:38 AM   #20
lizbeth
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of course welcome to the group Karen
04-04-2013, 04:48 PM   #21
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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!!!
04-05-2013, 03:02 AM   #22
carolhew
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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.
04-05-2013, 07:40 AM   #23
Karen
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04-05-2013, 07:44 AM   #24
lizbeth
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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.
04-05-2013, 08:15 AM   #25
Karen
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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 !!!

04-05-2013, 07:14 PM   #26
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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.
04-05-2013, 07:49 PM   #27
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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...
04-06-2013, 05:22 AM   #28
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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?

Last edited by lizbeth; 04-06-2013 at 06:31 AM.
04-06-2013, 07:30 AM   #29
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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.
04-07-2013, 09:22 AM   #30
lizbeth
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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. sending you a big virtual hug.
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