New to Crohn's disease

Hi Lauren! Welcome to the forum. What a way to start your adulthood!

There are many members here who were diagnosed as young adults or even teens. Some are still in their 20s. I was diagnosed at age 39. I haven't ever had surgery and I hope I never have to.

Do you know where inflammation was found?

You should spend some time on this forum searching different things to read about others' experiences with the meds you're taking. The Asacol is pretty standard and should have few side effects, but some people are intolerant. Have you told your DR that you are still suffering? Has anyone considered putting you on a course of steroids to stop this flare?

The Flagyl is a pretty standard med for some people, but it can cause problems, too. When is your next appointment?

Now that you are an adult you are responsible for yourself in new ways. It's not a good idea to go out and drink a lot. Read the pharmacy info on the meds you're taking to see what they say about alcohol. If no alerts are present, sure, have a glass of wine. Have a beer. Pay close attention to how you feel.

This is also a good time to start making healthy choices about what you eat. People with Crohn's do a lot better when they stay away from junkie food. You can read a lot about diet on this forum.

The joint pain is probably from the Crohn's. Tell your GI about it.

Water is always best - your feet aren't swollen because you're drinking too much water, but if you're having a lot of diarrhea you should have some juice. You certainly don't have to have gator aide more than 1 time a day. It's full of sugar and you don't need that.

Let us know how things go on Thursday.

Hey Lauren,

Im 24yrs old and was just diagnosed a few months ago in December 2012 while I was admitted inpatient with a bowel obstruction. I was put on a liquid diet for close to 2 months and various meds. The only med that seemed to work was prednisone but thats not intended for long-term use.

I ended up needing a small bowel resection February 1st (NO OSTOMY BAG!) Since then, I have been on 6-mp and Humira and have felt GREAT! The docs say I will probably need more surgeries in the future because my case is so aggressive, but we can tackle that when it comes.

I still can't tolerate a lot fo raw fruits and veggies, but am working on trying to eat as healthy as I can. Its hard when the only foods that don't upset my stomach bad for me! I have been able to have a few cocktails here and there with my friends for happy hour and am happy to say I am back at work (12hr shifts). I hope they can find the right path for you to control your symptoms. Good Luck!

Hey Lauren. I'm sorry you are looking at a crohns diagnosis, but happy you found healingwell. This forum is a wonderful - lots of great information, and very compassionate nice people.

My husband is the one with Crohn's disease, but when you are married to a chronie . . . When my husband was first diagnosed with crohns I really thought it was the end of our lives. Now, 5 years later, I can honestly tell you, we're doing pretty good.

We aren't living the carefree life we used to - we have to plan everything out to the nth degree; we have to stick to a routine and make sure he gets plenty of sleep and rest; he has safe foods he sticks to,so he isn't as adventurous with food as he used to be; and we do have some health worries.

BUT, he is healthy, not in any pain, is holding down a full time job, got certified as a kundalini yoga instructor on top of that, teaches yoga part-time, travelled to India for 3 weeks to visit my family (my husband is American), adopted 2 dogs, and in general is living a pretty good life. Life will be good again as soon as your doctors get you on medicines that bring your disease under control. It could take some trial and error, but hang in there and you'll get there.

While you are still flaring, stick to a low residue diet - basically foods with little fiber and no roughage (like salads). Also, I gave my husband plenty of pedialyte to keep him hydrated when he was flaring. Sugars gave my husband a lot of gas, so nothing with sugar. Fruit sugars and honey did ok with him - so I gave him juice box jellos and decaf tea with honey. Also, if you aren't lactose intolerant, eat plenty of Greek yogurt. It has a lot of probiotics that will help. Be sure to take it 2 hours or so after your dose of flagyl.

Depending on where the inflammation is, your doctor should prescribe you medications to control the inflammation. Steroids are good to bring the disease under control, but you shouldn't stay on them long term. Keep going back to your doctor until you feel you have good quality of life.

Hang in there. The pain will end soon.

Hugs,
PV

My husband's inflammation was also in the transverse colon. When he was diagnosed, he was in the hospital with both a c-diff infection and a terrible crohns flare. He was looking at a colon resection, even while on 120 Mgs of solumedrol. They gave him remicade as a last ditch effort, and it worked! He's been doing well ever since, with just a few blips along the way. He didn't have any small bowel involvement that we know of.

Do you have the results of your endoscope as well? Ripe Bananas helped my husband with diarrhea a little - it helps firm up stool a little bit. Keeping sugars and carbs lower, helped manage the painful gas symptoms. A heating pad helped with the cramping a little. Ginger tea with lemon calmed his stomach some. Also, tucks witch hazel wipes helped keep the angry hemmies at bay. To help keep his calorie count up, I gave him boost glucose control drinks.

Also, he found meditation very helpful to keep his spirits up and to help find equilibrium when battling this difficult disease. He also took benedryl at night to try to knock himself out, so he could sleep.

The meditation really helped my husband control the steroid rage. He was on steroids continuously for about a year when he was initially diagnosed. He started at 140 mg of prednisone, and slowly over time stopped it. When he first started taking the steroids, because the dose was so high, he also had steroid induced diabetes. He was so agitated, that he couldn't even watch action movies. But his meditation practice that he started then, helped him control it. Now he's made meditation and yoga part of his daily life, and it really seems to help him find center, be calm and be positive.

He had major moon face when he was on the steroids, but it went away once he sopped. He'd put on weight on the steroids, but with exercise and a good diet, he lost the added weight pretty quickly. After that year when he was on steroids, he was diagnosed with osteopenia - but now after several years of being steroid free and doing weight bearing exercise, his bone density is normal.

I'm not trying to scare you here - I am just telling you that steroids are sometimes a necessary evil. However, as you can see from my husband's extreme case, it is still manageable. Hopefully, you'll only need to be on it for a short spurt unlike my husband.

I think over time, the fear of needles will go away. If you do need to be injected, maybe someone you live with can help. Or you may be able to arrange to get the shot administered by the nurse, if the doc office is close by and you can talk them into it.

Hope you get a good nights rest.

Hugs,
PV

Post Edited (PV) : 4/2/2013 10:36:17 PM (GMT-6)

Everyone's different. I love pred and never had a bad side effect. Some people find it hard to sleep after taking it at a high dose for a while. It can cause acne, weight gain and puffy face. You should talk to your DR about what to expect and how long s/he thinks you'll need to take it. It is important to have a plan of how to get off and what maintenance meds you'll take once you're done with pred.

I was on IV steroids in the hospital and then prednisone at home. The only real side effect I noticed was that I was constantly energized (not so bad). I was jittery when on high doses and could not sleep either, but never felt tired during the daytime...just constantly energized. I even cut out caffeine entirely to help with the jitters. Other than that I had no issues on prednisone

Oh, my husband normally takes lots of calcium and vitamin d while on pred to try to help with bone loss. Also, he takes it in the morning, so he can sleep at night.

Hi Lauren and All,

My name is Michelle and I am 23 years old. I was just diagnosed with Crohn's disease. I also have Hashimoto's disease, which are connected according to what I've been reading. I am very new to the disease and also scared. I believe that at least at this point my crohns is mild. After a colonoscopy they found 6 ulcers in various locations in the large colon. I initially went to the doctor with inability to control my bowels and constant diarrhea. My doctor and boyfriend were initially convinced it was irritable bowel and psychological because for the most part, I wasn't waking up out of my sleep to use the bathroom and I have high anxiety. Needless to say, that obviously wasnt the case, but the anxiety I'm sure contributed to this in some way. After diagnosis, my doctor put me on asacol 2 pills 400 mg each 3 times a day; no steroids or anything else. My biggest fear is that I have no idea if this is my remission or my flare up period. What I'm dealing with now is annoying, but manageable, and I am fearful that this will just get worse. I've found this forum to be informative but this is my first time posting. Any helpful tidbits would be greatly appreciated!

Wish you all the greatest health!
Michelle

Mfargnoli3,

Welcome to the forum. You should start a new thread and introduce yourself!

If you are having diarrhea and bowel incontinence this is not a "remission" for you. "Remission" means no symptoms of Crohn's.

As for your anxieties, yes, anxiety affects everyone's bowels. But I have to say, having bowel incontinence will absolutely make someone anxious. Don't feel bad about being anxious, you have good reasons to worry!

I hope the asacol gets things under control for you. If you don't feel better in a week or so you need to call your GI back. I'm not saying you should expect remission in a week, just an improvement. Asacol is not as fast-acting as a steroid, but if you can get better without a steroid that is a good thing.

scifigal2k said...
You mentioned being alone. I just want to let you know that I was diagnosed at 24, I'm almost 27 now. Since my diagnosis, I've been hospitalized almost 20 times with so many complications. But in spite of all of it, I've found a wonderful man that I've married who has supported me the entire time. Not once has he complained, not even when I was on a feeding tube and he was in charge of the equipment, etc. because I was too weak to do it. I'm now pregnant with our first child. There is a lot to look forward to, and you can have a full and complete life in spite of the Crohn's. A lot depends on your attitude about it, but you can find the things to enjoy about life!

And some of us are older and completely alone.

Well, okay, I have my parents.......

I totally understand that. Just trying to avoid the steroids as long as I can. Thanks for the advice! about to look into it