Crohn's Disease....any relief?

Question

About a month ago, i was diagnosed with Crohn's disease, and i've been going through so much just dealing with it. Constant cramps, bowel movements, and the development of painful hemorrhoids. I can hardly fall asleep at night having this pain in my rectum. I'm currently on pentasa for the CD, and on a diet more filled with fiber and hydration, and using ointments to help with my hemorrhoids, yet, i've been also dropping weight....i'm worried as to what might happen next if all doesnt get better...

Answer 1

Hey, I've had crohn's since I was 8, which also took 4 years to diagnose and I'm now 16.

Try not to stress about anything, it can aggrevate your symptoms. I was on many different medications just to make it managable, which wasn't working in my case, bare in mind it can take a few weeks to notice the benefits from your meds. They said they were going to have to operate on my ulcers and bowel in general, it doesn't cure you but it gives you alot less pain if it's so severe. It's all uphill until you are past the first few months like the other guy said, they are the worst, then it's all about keeping it as best you can, and until then it's very difficult to control. Try to do things to relax, when I have an episode of cramps etc I like to read or just listen to a couple of songs on my iPod or try to sleep. Some friends in hospital i've met over the years used to paint, since it's the most relaxing therapy. Anything which takes your mind off it as best you can is great. Good luck, and remember it probably won't get worse than it is now, only better. =o) Don't hold back from calling your doctor if your pain gets worse, they are there to help and make you well again.

Answer 2

Hey, I know what you're going through. I've had Crohn's for a couple years now. Flares are horrible... But there are some things you can do to get healthy again.

I've been in remission for almost a year and it's no accident. It's no fluke. When I started doing the following things, I gained thirty pounds in a matter of weeks and my symptoms pretty much just went away. You can heal yourself too, but it'll take dedication.

First and foremost, you need to remain positive, and you must believe that you can be healed. This is hard when you're so sick, but you have to do it. Studies have shown that people who are optimistic about their Crohn's have less flares overall.

Also, it's good that you're taking Pentasa. It's *very* important for anyone with Crohn's -- but unfortunetely it takes about a month to build up in your blood stream to the point where you'll feel much difference in your health.

This is why doctors almost always prescribe Prednisone. You didn't say whether or not you've been on it, but since you're still having symptoms and you didn't mention it, I think you probably haven't. You should ask your doctor about it if that's the case, because Prednisone is extremely effective and immediate.

It also has some nasty side effects you need to be aware of, though: It'll make your face round out and it'll give you horrible acne. It'll make you more susceptible to infections and it'll make you hot all the time. And it'll make your moods swing like a yoyo.

But it'll almost certainly heal you for as long as you take it.

Also, be aware that you have to be weaned off Prednisone. Stopping it immediately is highly dangerous, but under a doctor's supervision weaning can be done. Some people have difficulty with weaning and have to go more slowly, but it can be done.

All these meds will help you a lot. But for most people, they don't stop flares completely. They just make them less frequent.

The single most important factor for long-term remission, given that this is a digestive disease, is diet. The diet I follow, and the one which thousands upon thousands of people have been virtually healed by, is called the Specific Carbohydrate Diet, or SCD. It's somewhat radical, and requires a great deal of willpower to stick to, but I'm convinced it's what keeps me in remission.

You can read more about SCD at http://www.breakingtheviciouscycle.info/.

Sadly, and due to the unique nature of food, none of the Crohn's diets have really been studied scientifically, so your doctor won't recommend them. My doctor told me, "I can't actually suggest you go on the Specific Carbohydrate Diet, but if you want to, and it works for you, go ahead." That's pretty standard, which is sad because so many people could be helped if only their doctors could tell them how.

Finally, I'd just say: Don't lose hope. You can be healed. You can have a healthy, vibrant life. The steps you have to take aren't painless (acne?! no more wheat?! ack!), but trust me, Crohn's is a lot worse. :)

Answer 3

The following link may be helpful. It is from the national digestive disease information clearing house on crohn's. It has more info than I can provide on this page

//digestive.niddk.nih.gov/ddiseases/pubs/crohns/

in addition to reading this site. I would seriously suggest you check into seeing a therapist who specializes in treating people chronic diseases like Crohn's. A disease like Crohn's can cause a lot of anxiety and stress, and many doctors ignore this fact when treating it. So getting help with the emotional toll of the disease, at the beginning would be very good. (This is not to say you are crazy. Just that most people with chronic diseases like Crohn's have to deal with the emotional issues of the disease.) Also, in some people, stress and anxiety can worsen symptoms, so preventing the stress and anxiety is a good thing.

Answer 4

There can be a number of complications associated with Crohn's. These include: calciphylaxis, systemic lupus erythematosus, you may even experience psoriasis.

More common complications include: is obstruction or blockage of the intestine due to swelling and the formation of scar tissue. The abdomen may also become bloated and distended. Another complication is sores or ulcers within the intestinal tract. Another type of complication commonly encountered in people with Crohn's disease is related to malnutrition or the presence of nutritional deficiencies.

With this last complication, diet is even more important to you regaining and staying healthy.

BTW, some of the drugs used in treatment include: Aminosalicylates (5-ASA),
Corticosteroids, Immune modifiers, Antibiotics, and there are a number of other biologic therapies.

Tough condition, hope the resource links below can help.

Pat O'Connor
Lymphedema People
http://www.lymphedemapeople.com

Answer 5

I'm only 15 and have Crohn's, it sucks, I've had it since i was 13, but check your blood sugar often, and you need iron in your system, eat meats. But everyone with it says the first 2 months are the worst. Youll be fine

Answer 6

WHOO! This brings back memories! Yea my mom had to take REMICADE when her doctor told her she had it (she didn't) and she had Muscular Dystrophy (whatever u want to call it) but here's where the trouble came in! I swear I had to tie her shoes everyday and all that mess then she was paralyzed and noone thought she would make it and she still has those problems, kinda makes me sad but o well. In case you have MD I advise you NOT to take this medication or you will suffer greatly.

Answer 7

Check out this web site for Crohn's, it's very informative;

http://www.healingwell.com/community/default.aspx?f=17

Answer 8

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Adult Crohn's Disease and REMICADEThere's help for Crohn's control.
If you suffer from Crohn's disease, you may be all too familiar with the cycle of recurrent flare-ups and treatment. REMICADE can help you achieve Crohn's control by helping to put flare-ups on hold and to keep them there.

Imagine putting flare-ups on hold.
REMICADE has been proven to reduce the signs and symptoms of Crohn’s disease and induce and maintain remission in patients with moderate to severe Crohn's whose disease is still active despite treatment with other therapies.

REMICADE is the only FDA-approved Crohn’s treatment that blocks TNF-alpha, one of the underlying causes of inflammation.
REMICADE has also been shown to reduce the number of draining enterocutaneous and rectovaginal fistulas and to maintain fistula closure.
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