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Newly Diagnosed Crohn's is killing me:((

My name is Stacy. I was just recently diagnosed with moderate/mild Crohn's. My GI has me on Uceris 9mg which is doing absolutely nothing to help me. I get diarrhea once-twice a day usually before noon. There's a strong history of Colon Cancer In my family but my GI dr said I don't have to worry about colon cancer since the Crohn's is in my small intestines terminal ileum. I'm a mother of 2 beautiful baby girls a 3 year old & a year old. I was diagnosed after the birth of my second daughter. I'm starting a new career as a Registered Nurse in a couple of weeks & im getting very nervous that I'm gonna get diarrhea during the orientation period which is 10 days 7am-3pm. If I get the diarrhea tmduring this time, I will be extremely embarrassed as the only way to rid the nasty smell is to shower right after a bm. If anyone has any advice on how I may avoid the diarrhea for my 2 week orientation period I would truly appreciate it. Also if anyone knows foods/drinks I should absolutely avoid for a flare up please let me know as my dr didn't give me any restricted diet. Also if anyone knows a great med that may get my condition in to remission please share. I HATE this disease & will do whatever is necessary to get it into remission permanently.:sign0085::sign0085::lol2::sign0085:
 
You could inquire as to whether a short dose of prednisone might help get things under control...
As to what to eat or nor, that is so hard as everyone responds so differently.
Good luck!
 
Don't give up.

Finding a medicine that works is a trial and error process, and very frustrating.

I'm on a combo of 6-Mercaptopurine and Pentasa, and it works.

Have you seen a specialist? If not, get a referral.

Don't be afraid to visit your Doctor and get a different medicine. You may need to be very firm with the Doc to do this. Remember, if the medicine isn't working, you have a right to try something else.

A course of Prednisone will certainly help, and though it won't remove the symptoms it can help.

We've all been in your position. It could take a while to find the medicine that works for you, but you will get there.

Don't give up. Stay strong. Nurses are some of the strongest people I know.
 
Don't give up.

Finding a medicine that works is a trial and error process, and very frustrating.

I'm on a combo of 6-Mercaptopurine and Pentasa, and it works.

Have you seen a specialist? If not, get a referral.

Don't be afraid to visit your Doctor and get a different medicine. You may need to be very firm with the Doc to do this. Remember, if the medicine isn't working, you have a right to try something else.

A course of Prednisone will certainly help, and though it won't remove the symptoms it can help.

We've all been in your position. It could take a while to find the medicine that works for you, but you will get there.

Don't give up. Stay strong. Nurses are some of the strongest people I know.
Hello: I was recently diagnosed with Crohn's and strictures. My surgery is scheduled for May 23,2016. GI says he has to resect six feet of my small intestines and I'm terrified. I noticed that I had frequent loose stools for some years but was told it was IBS. Now it's Crohn's, Ulcers and strictures. Just don't know what to expect. For years I knew certain triggers but I attributed it to stress. What can I expect after surgery?
 
Hello: I was recently diagnosed with Crohn's and strictures. My surgery is scheduled for May 23,2016. GI says he has to resect six feet of my small intestines and I'm terrified. I noticed that I had frequent loose stools for some years but was told it was IBS. Now it's Crohn's, Ulcers and strictures. Just don't know what to expect. For years I knew certain triggers but I attributed it to stress. What can I expect after surgery?
I'm new to this forum so excuse me if I'm on the wrong page.
To the writer that's concerned about the 2-week nursing orientation, when I have flares, I eat rice, baked potatoes or grits until it passes. Good luck and try to stay calm.
 
to Stacy 88 - it could be worthwhile to speak with your doctor about your symptoms (keep a food diary and track your symptoms like Ron suggested!)

Here's some exmaples to things to ask about different treatment options when you talk with your doc:



Can you tell me why you have decided to offer me this particular type of treatment?

What are the pros and cons of this treatment?

What will it involve?

How will it help me? What effect will it have on my symptoms and everyday life? What sort of improvements might I expect?

How long will it take to have an effect?

Are there any risks associated with this treatment?

What are my options for taking treatments other than the one you have offered me?

Is there some other information (like a leaflet, DVD or a website I can go to) about the treatment that I can have?
 

Scipio

Well-known member
Location
San Diego
Hi Stacy - One potential problem I can see in your story is that the doc has you on Uceris for a case of Crohn's located in the terminal ileum. Uceris is budesonide that is chemically designed to be released in the colon rather than the terminal ileum. It's often used for colonic Crohn's and especially ulcerative colitis (hence the "UC" part of its name). Perhaps the Uceris isn't working because it is being released too far south in the gut, so to speak.

The form of budesonide that is usually prescribed for ileal Crohn's is Entocort, which is designed to release in the terminal ileum. Thus, perhaps you can discuss with your doctor the idea of switching to Entocort first before going on the prednisone. Budesonide in general has fewer and milder side effects than prednisone, so it would great if you could get that working for you in the form of Entocort rather than switching to pred.
 
Eating scrambled egg on toast helps me a little with diarrhoea sometimes, keeps things under control until later in the day, which can be helpful when I have a busy morning.
 
Good luck with your new job. Hope you make it through orientation. And best with your young family. I can imagine the young ones are keeping your busy and worn-out.

As mentioned by others there isn't a single diet idea that seems to works for all. One diet might for one person and not another. In my case, for example of late I've been following what I call a wild caught salmon diet. I eat a few other foods too such as grass fed Irish cheese, spinach, oranges, nuts, etc. The salmon diet has my stomach working wonderfully. I wish my energy levels were better, but I'm guessing that will come around eventually. The diet works for me, but I would guess others that tried it might not find it as helpful.

With diets though, the one most people start with is called the SCD. It is where many carbohydrates are avoided, and probiotic rich foods are eaten. More on the SCD can be read in the diet section.

http://www.crohnsforum.com/forumdisplay.php?f=17

Another medication that might help is low dose naltrexone (LDN). LDN is a generic drug that can sometimes help those with IBD condition such as Crohns, UC, etc. It has few negative side effects. It is typically a medication that you will need to ask your doctor to write a prescription for.

More on LDN can be read in the treatment section.

http://www.crohnsforum.com/forumdisplay.php?f=32
 
Aside from the information everyone else mentioned...

I have had quite a time getting my Crohn's under control. My GI specialist prescribed Lomotil and I use this when diarrhea is out of control and I must leave my house. I am not sure if it would be an option for you, but it may be worth mentioning. I was never able to get Immodium to work but Lomotil has been helpful for me.
 
Just a practical idea: There are sprays, we used one called "Poo Pourri" and another called "Chanel #2" which you can spray into the toilet before you go which helps to trap the odor. They are small. Might help at work? It also can help odor to flush several times as you go.
 
For me the quickest drug to work that would probably be one the doctor would prescribe without many questions is prednisone. It's not something you want to take long term but it definitely got me out of my flare and helped keep my symptoms away until I was able to start Remicade. I was also having a lot of loose bm's but both the Pentasa and prednisone helped stop those all together.
 
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