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Crohn's Disease
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Posted 1/17/2011 9:03 PM (GMT 0)
Hello Forum Folks,
Brand new to the forum, 1st post.
I'd really like some help, and support understanding my husband's Crohn's Disease diagnosis. He's very sick, and is now back on medication that was causing him to experience extreme pain. I'm just not convinced we are doing everything we can to help my husband through this horrible experience. All your expert advice is welcome.
Sincerely,
BZ
Posted 1/17/2011 9:10 PM (GMT 0)
Welcome to healingwell. What kind of medication is your husband on? What have you been doing to treat his disease and what symptoms does he suffer from? Crohn's disease is such a crazy disease that has so many different types of symptoms. It would be good to know his background so that the members could give you some good advice.
Posted 1/19/2011 10:03 PM (GMT 0)
What kind of medication is your husband on? Currently back on Azathioprine 50mg, 3x day

What have you been doing to treat his disease and what symptoms does he suffer from? He's working every day and just staying close to a toilet, at all times. He's in a lot of pain, and sleeps almost every hour when he's home. The Doc has now advised to limit fiber in the diet. Before the Doc was saying that diet won't affect his symptoms that much!! For the longest time we've just limited all dairy products and seeds, and nuts.
Posted 1/19/2011 10:17 PM (GMT 0)
Im not sure how long your husband has been on azathioprine but it can take about 3 months to take effect.
It worked for me and stopped my pain, it should not be causing him pain. Food can make a difference, fibre and crohns dont always mix that well. It might be an idea to look at a low residue diet
Posted 1/19/2011 10:59 PM (GMT 0)
How long has he been on the azathioprine - like missmuffet said, it takes months to have an effect, so perhaps your husband's doc might consider steroids like Entocort or prednisone, which are faster acting and can relieve symptoms while your husband is waiting for the azathioprine to kick in?
Posted 1/19/2011 11:09 PM (GMT 0)
Welcome to HW. I'm sorry to hear your husband is so sick and in pain.

It's not typical for any of the drugs used to treat CD to cause an increase in pain as part of the treatment.Sometimes there is a bad reaction to a med that can cause pain.

Where is he having pain? What makes it better or worse? Why does he think it's from taking the AZA?

AZA can cause pancreatitis, one of the few side effects that is likely to cause pretty bad pain. You can get increased nausea and diarrhea with AZA in which case it may not be a good idea for him to stay on it.

What other treatments has your husband tried? How long ago was he diagnosed?

Is he seeing a GI who specializes in treating IBD?

Sorry for all the questions, but it's helpful to have a more complete picture of the way his disease is presenting, how long he's been sick, etc.

It's good your husband has you there to support him during this difficult time. It can make a big difference in the quality of care he gets if he knows more about the disease and his treatment options.

Patricia

Posted 1/19/2011 11:41 PM (GMT 0)
I'm becoming more and more grateful for all of your posts! I'm learning so much, and feel like I can now "speak the same language" with my poor hubby.

Where is he having pain? He's always grabbing his left abdominal area, and wincing. Or he'll just get shooting abdominal pains in various places.

What makes it better or worse? Right now I think only the sleeping helps.

Why does he think it's from taking the AZA? He did develop the pancreatitis before, so he's quite leery about being on the AZA again, but is willing to obey the Doc.

What other treatments has your husband tried? It seems like we just started all of this, but I believe it's now been about 6 months (July/Aug, 2010) now. He's also struggling with Liver problems, therefore cannot handle the steroids anymore. They did try that first level.


Posted 1/20/2011 6:10 AM (GMT 0)
Did he develop liver problems as a result of taking medications, or does he have some other sort of liver disease; do you know?

If you click on the "dietary therapy" link in my signature, you should be able to find some (limited) information about low residue diets, to get you started.

All the best,

Ivy.
Posted 1/20/2011 4:27 PM (GMT 0)
Did you husband call the GI and tell him about the pain? If he didn't, he really does need to call today. Tell him it is not normal and he should not just tough it out. It means something is wrong.

If he did call the doc already to report the new symptoms, I would think about calling again. And have some questions for the doc - as in what does the doc think is causing the pain.

There are other med choices out there that could be tried instead of AZA depending on the location and nature of his disease presentation and whether he got better on AZA the first time.

I am not a doctor. But if I were your husband I would not be taking the AZA if it is causing pain. I would be worried that the pancreatitis is making a comeback. Chronic pancreatitis is difficult to diagnose because it rarely causes elevated lab values (lipase, amylase). So it may be hard to figure this out.

Potential long term complications of chronic pancreatitis are diabetes and fat malabsorption.

It could also be the Crohn's getting worse. If so, then the doc needs to know so he can check things out.

Is the GI monitoring his labs? How often?If the AZA is causing elevated liver enzymes, then one option would have been to switch to a trial of the combo of Imuran and Allopurinol. Allopurinol blocks one of the enzymes that breaks down AZA and reduces the stress on the liver. If he has pre-existing liver disease then I am kind of surprised the doc put him on AZA,.

I am guessing that your husband is not being seen by a GI who specializes in treating IBD.

It's not unusual for it to take 2-3 years after diagnosis to get a flare into remission. The disease presentation may change or progress during that period making remission a moving target. I'm guiessing that most people are in a really bad flare that's been going untreated for quite a while before they get diagnosed so that also makes it hard to get into remission. Many of the meds used take weeks to months before you know if they are going to be effective or bad side effects appear.

My son has left sided pain when he is flaring. His main symptoms when flaring are constipation, perianal disease and bloody stools. The left sided pain in his case is due to inflammation of the descending colon and sigmoid/rectal part of the colon.

He also has several strictures so some of his pain and poor motility when flaring is from those.

I would get a 2nd opinion ASAP from the closest IBD clinic affiliated with a teaching hospital or major medical center. If you tell us where you are located, people on the board can make suggestions. Make it a new post on the board so people know what info you are looking for. Many community docs only see a handful of IBD patients a year. The IBD centers may see 500+ patients a year. So they are familiar with all the complications and the latest research on treating IBD. A community GI is unlikely to have the time, resources or depth of experience to treat IBD patients with unusual presentations or complications.

I hope you are able to persuade your husband to call the doctor if he hasn't already done so.

Patricia
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