Hi all, new here and looking for advice! (Diabetes, Crohn's, Primary Sclerosing Cholangitis)

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Noctivigant
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 1/15/2009 8:40 PM (GMT -7)   
Hi,

I was searching for information on Crohn's Disease and the use of Immodium, and came across this forum.

Here's my story...

I'm 19 years old, and have had Type 1 Diabetes for about 10 years. It has always been fairly well controlled and I have had no complications. I was diagnosed with Glandular Fever three years ago, and while that cleared up, I have been easily fatigued since, and my glands and throat flare up with infections. Over the past year, I've had an unexplained Pilonidal Sinus excised, and an unexplained Peri-Anal Abscess excised. Within the last two months, I was diagnosed with Moderate to Severe Crohn's Disease and Primary Sclerosing Cholangitis after becoming jaundiced due to narrowed bile ducts of the liver, caused by PSC.

I'd never had any problems with cramping or diarhhea until starting on the medication for PSC. The Crohn's was discovered after colonoscopy revealed inflammation and ulceration of the bowel.

I've been prescribed 500mg Ursofalk twice daily to treat the PSC, which is working well, but causes diarrhea.

For the Crohn's, I've been taking 50mg Imuran per day, which hasn't done anything noticeable except worsen the diarrhea.

I've also been taking Prednisalone. I started on a 25mg dose, and have tapered down to 5mg. When i was on 20-25mg, I felt much better - I had a LOT of energy, no cramping or diarrhea, but had some mood swings. It also affected my blood glucose levels, and made my diabetes control a bit unpredictable.

At the moment, things aren't going so well - I'm generally fatigued and aching. Some days I randomly cramp up, and am going to the toilet every 20-40 minutes. Some days, I'm comparatively fine. There doesn't seem to be much of a pattern.

What I wanted to know is - Is there anyone out here with both Diabetes and Crohn's? How do you balance the treatment of each?

Due to diabetes, the bulk of my diet is high in carbohydrates and high fiber foods, but I've been reading that lower carbohydrate diets are generally better for those with Crohn's.

Any help would be greatly appreciated.

Thanks,
Aidan

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/15/2009 8:48 PM (GMT -7)   
Hello Aidan,

Welcome to the forum! You fill find many friendly, helpful, and caring people here! I don't have diabetes so I don't have any insights for you, but I remember other members who do. Hopefully they will be by soon. Just wanted to welcome you! Take care!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/16/2009 2:41 AM (GMT -7)   
Hi and Welcome to HealingWell. This is a very friendly and very helpful site.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/16/2009 4:47 AM (GMT -7)   
Hi Welcome to Healing Well glad you joined us. I follow a low residue diet for my crohn's but do not have diabetes. Some here do and hopefully they will be along to help. Alot of us also have low B-12 and take a needle for it. I also take vitamins ,I also had higher levels of glucose on the pred. and got better as I went off it. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/16/2009 7:13 AM (GMT -7)   
Hi! Welcome to the forum! I'm sorry you're having a tough time health-wise right now, but it's really great that you are taking things into your own hands and researching for your own health! Some reading that might help you: "Breaking the Vicious Cycle", by Elaine Gottschall, "Life Without Bread", by Allan and Lutz. These books both promote a low carb diet for IBD. I think T1 diabetes is discussed in the Life Without Bread book as well. Good luck to you!!!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 1/16/2009 8:16 AM (GMT -7)   
Hi. I'm so sorry you're in this situation, and that your body is giving you so many different things that require opposing treatments to worry about. I don't think you can stop the ursofalk - you must keep the PSC in check, and you say your diabetes has been in control, except for the prednisone messing it up. If the meds for crohns are not helping, it is probably time to try other meds. Have you tried the mesalamine based meds - pentasa, colazal, lialda, asacol? These are usually the first meds prescribed for crohns - for mild crohns. If the imuran isn't helping on it's own, maybe teaming it up with one of these will help? Also, if that doesn't work, ask if you can try Remicade with your other meds, and how remicade may affect PSC.

My husband has crohn's, and the reason that he's healthy today is because of the remicade. I think if you can get your crohn's under control, then, your diet should not be a huge issue. Diet really can only help control the symptoms of crohns, it cannot reduce the inflammation. However, if you reduce the inflammation, your diet can be more varied - you may still have foods you can't tolerate, but it won't be as bad. Give your GI a shout, and ask him what other meds he can try to get your crohn's under control.

I hope you start feeling better soon.

Hugs,
Preetha

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 1/16/2009 10:38 AM (GMT -7)   
I'm sorry to hear that you're struggling right now.  That's pretty common when we're first diagnosed and the doctors are trying to figure out what works for us and what doesn't.  It's also pretty common to have problems as you come off steroids.  My first thought was that 50mg of Imuran sounds low.  That's where my GI started me, and it was nowhere near enough.  I'm heavy, though, and if you're a small person it could be the right dose.  I definitely recommend talking to your doctor about the meds.  Steroids often mess with your blood sugar levels, so you'll want to stay clear of those as much as possible.  But there are many options beyond pred and Imuran, and your doctor should be able to help you find something that works.  Good luck!

Noctivigant
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 1/31/2009 4:46 AM (GMT -7)   
Thanks for all of the well wishing!

Unfortunately (for me) my gastroenterologist on a 6-week leave while his wife has a baby, but I have an appointment with him the day he returns. (16th Feb) In a freak of nature, my GP and my Diabetes specialist are also on a month's leave.

I did speak with another doctor about my concerns, and have been going for a fortnightly blood test, and will be discussing Imuran and Prednisalone dosages with my Gastroenterologiston the 16th. If anything's out with the blood tests, I've been assured that someone will contact me immediately... bektold, I'm fairly lean, and only weigh 73kg. I'm about 6 foot tall. I think the plan was to have me on 100mg of Imuran if the blood tests give a green light.

In the meantime, I've been taking a Metamucil soluble fiber supplement every evening before bed, and in the last week or so, I've generally been having one solid (normal) bowel movement a day, which is nothing short of marvelous! turn I had an appointment with an osteopath today, and had a general "fine tune" of my back and neck, which feels great right now. Hopefully it'll last. I'm going on a bit of a checkup spree, and am getting my teeth sorted out in the coming week (chips, a a cavity that was picked up by xray), getting a haircut (ok, so that's not medically relevant...) and making sure everything is as good as it can be.

Things are looking up, and I'm optimistic!

Although I haven't been posting, I've been checking this forum every day or two. I'd like to thank everyone here for being so positive and supportive!

Much love!

Aidan

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 1/31/2009 12:02 PM (GMT -7)   
That's alot to deal with, diabetes is such a high-maintenance disease. I just wanted to throw out something about the low carb and fiber. I eat high fiber, I love whole grains, fresh fruit and veggies, oatmeal, and I buy anything with extra fiber (poptarts, sweetner, etc.) I have a son who has to eat high fiber, and a husband who doesn't care what he eats so I try everything I can to sneak in anything healthy. I want my kids to have healthy digestive systems and fiber is supposed to help the 'normal' people! I have stricturing CD and was told that if I start feeling backed up, then cut down on the fiber, otherwise just be my own best guide for how much I should have. That's what I do. I know alot of people have good luck with the low-residue diet, but when I do that because of a flare, I end up with more cramping and D. If I ever need to try an SCD diet I will, but right now all I need to avoid is popcorn! With Crohn's it seems to be whatever works for you!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. <S>150 mg Imuran</S>, bentyl, entocort, vicodin as needed, Humira, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.

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