Advice on first flare causing hospitalization

Hey everyone. First, a little bit of background information:

I am a 20 y/o female, dg with Crohn's about a year ago, after getting a colonoscopy and MRI showing inflammation in my small bowel. I have been suffering from symptoms for about 2 years now. Usually, I would eat something I am not supposed to, and I would get really bad pain in my tummy and diarrhea. Some other times, I would get just really bad pain with no diarrhea.. pain that would make me cry uncontrollably in the fetal position.

I began using asacol right at the beginning, and it did not do anything for me. My gastro doctor tried me on Imuran, and after increasing my dose for the first time, I got really sick and began throwing up uncontrollably, which resulted in me going to the ER (they thought it was my gallbladder - it wasn't), and my doctor told me to stop taking this medication just in case since it sometimes has those side affects. Then, she told me to try trimebutine, a drug you take about a half an hour before meals 3 times a day to regulate bowel movements. I noticed that it may have helped a little bit, but I still got sick sometimes. Then, a couple of months ago, I tried Pentasa. So, I was taking both Trimebutine and Pentasa. I noticed that the Pentasa seemed to be working, or so I thought, I would still get sick every now and then, but it was bearable. This was great for a couple of months. Then, my heart starting thinning out so bad. It was everywhere! I still have hair, but I used to have thick long hair, and now it is really limp and thin. I told my doctor about this, and she told me to cut my dose in half. I done this for awhile, and it didn't work. So, over Christmas, I stopped taking the Pentasa for a couple of weeks to see what would happen. I was really distraught over my hair. I was ok for the first little while, and then I got really sick for three days, no matter what I ate (even chicken noodle soup), I would have to go to the bathroom immediately after.. and it was explosive!! I also had unbearable pain. So this went on for three days, and I started taking the Pentasa again. So this is where we are now.

About a week ago, Saturday night at 9 PM, I began getting horrible pain in my upper stomach and back, and down the right side of my stomach. I couldn't get comfortable no matter what way I moved. I began getting sooo nauseous. I was throwing up uncontrollably, and the pain was completely and totally unbearable. By 12:30 AM, I had to go to the ER. This pain was different from regular flares, I had no diarrhea, I had a normal bowel movement that morning, and I ate healthy all day and even done a workout that morning. I went there, and was told that I would have to stay. They done an X-Ray and CT Scan and it showed that I had a partial blockage. They were giving me morphine for the pain, and also fluids through the IV, and gravol for nausea. They began to give me Cipro (IV), to fight off infection, and I had a reaction to it, I got a huge rash up my arm, and it was really itchy and was turning purple and red, so they stopped that and gave me benadryl through the IV. Then, they told me that I needed to start taking steroids to combat the inflammation. I didn't eat or even drink Saturday night, Sunday, Sunday night or half of Monday (only water to take my pills), and then around lunchtime on Monday they let me start eating clear liquids (chicken broth, jello, black tea, apple juice, etc.) They were giving me morphine for the pain, fluids, and started to give me flagyl instead of cipro since I had a reaction, as well as steroids. I was also taking my pentasa and trimebutine. Tuesday, I was allowed to eat soft foods, which was basically things like pudding, mashed potato, toast, things like that. On Tuesday, my heart rate was low, and it was only between 40-45 (it is usually 75 or higher). I didn't mention this to anyone because I thought I was being paranoid, but I felt like my heart was beating funny, fluttering in my chest, and I was having chest pain on my right side above my breast, going a little bit up my neck and down under my breast. My nurse checked my vitals and mentioned that my HR was slow and faint, and this is when I told her that I had been feeling weird all day with heart flutterings and chest pain. I thought it was anxiety. So, Wednesday night, they kept me in the hospital again. They also started me on oral prednisone that day, taking 40 mg/day for 2 weeks, then decreasing by 5 mg per week until finished. They done another abdominal x ray, and they said that there is no blockage anymore, but I have some stool backup (I did not use the bathroom since Saturday morning, and I also did not eat much and I was throwing up Saturday night. On Thursday, they released me from the hospital. I was feeling really weak, just sick in general, my heart was fluttery (they are sending me to get an ECHO test because one of the doctor's said that he thinks he might have heard a murmur), and I just didn't feel well. I tried eating toast, mashed potato, etc. things that I thought would be easy on the stomach. I am feeling a little better. This morning I had half of an orange, a slice of toast with a small amt of butter, and a pudding. I had a half of a bag of corn twists cheesies, I could not resist because I was absolutely starving and I figured hey they're soft (lol), and for supper I had baked turbot fish with no batter and some mashed potatoes. I am trying to drink lots of gatorade. Today, I had a BM before supper, (after sitting on the toilet forever waiting for it to happen lol) it was really heavy, a little hard and wide. I am peeing a lot, probably from the amount of IV fluids I was given over the past 5 days or so.

So basically, now, I am taking flagyl 3 times per day, prednisone in the morning, pentasa twice a day, trimebutine before meals, and ranitidine when needed.

I am kind of lost when it comes to everything. I don't know what I am supposed to eat. I look up lists online, and there's hardly anything I am allowed to eat. Some people say they have trouble with dairy, I didn't ever think I did, but then again it is hard for me to know. How are you really supposed to know if something is screwing up your bowels? I was eating healthy for the most part and this randomly happened to me out of nowhere!! The last thing I want is surgery.. the gastro dr at the hospital told me that if I don't get this under control I'm heading straight to the OR, I have about a 20 cm gap of inflammation in my small bowel. My regular gastro dr always told me that I have mild inflammation and it isn't too bad.

I just worry a lot. I don't know what to eat, I am stressed out, I don't know when to start eating normal or what normal even is. I don't know what medication she will try me on now since Pentasa has obviously failed, I don't know when I will start feeling like myself again, my stomach is bloated and I think it's retaining water from the prednisone, I just generally feel so unwell.

Does anyone have any tips? Is there light at the end of this miserable tunnel? What should I eat... can I eat cheese? Dairy? Chicken? When do I introduce normal or different foods to my diet? Is popcorn really as bad as everyone says? Can I eat seeds? I am just so confused LOL. Any medication advice anyone? As you can tell I'm basically lost on everything. You think you have a grip and then all of a sudden you know nothing. Sometimes I can get away with eating things and other times I can't.. usually greasy cheese melted is bad, like mac and cheese, gravy, poutine, mcdonald's, spaghetti, steak, etc.. but other times I could eat it and it wouldn't hurt! Boo.

Thanks everyone for taking the time to read my long rant lol... I hope I can find some answers soon.

I'm sorry you've been having a hard time strawberrys78. It can take a long time to learn everything there is to know about Crohn's (if that's even possible cause there is a ton of information and there's new information all the time it seems). I've had it for about 23 years now and I'm still learning.

During a flare a great go to diet is the low residue diet. You can make just about any meal low residue. It allows a little dairy depending on how you respond to it (not a lot though, that includes cheese). No seeds or skins and no popcorn. Chicken is ok but many find that the white meat (chicken breast) is easier to digest. How you prepare the food also plays a huge role. Baked, steamed, boiled (has less nutrients than steamed though) etc is ok. Nothing fried and many have mentioned more symptoms from charred foods (BBQ). The point is to choose items that are easy to digest. If you find that certain things bring on more symptoms then you cut those items out of your diet (this is why many mention keeping a food diary to help you keep track).

As for medication, so far you've mainly been treated with Mesalamine (Asacol, Pentasa etc) and those medications were created for reducing inflammation in the colon for people who suffer from UC. These medications are topical meaning they help with surface inflammation but Crohn's disease can cause inflammation deeper in the intestinal walls. So you have Crohn's in the small intestine, Mesalamine meds aren't going to do very much for you. http://www.crohnsforum.com/showthread.php?t=50253

The Imuran was a good try but it didn't work for you (or maybe it would have, your symptoms could have also been a partial blockage instead when the dose was increased). Purenthol (6MP/Mercaptopurine) might be something else to try as it's similar to Imuran (a low dose of Allopurinol can be added to a low dose of 6MP to make it less toxic if 6MP alone isn't working). Other options could be Methotrexate, Humira, Remicade, Cimzia, LDN etc. Finding which medications or combinations of treatment work for you is all trial and error.

As for your heart rate and the palpitations you were having in the hospital, I'm wondering if that was because of the steroids. Steroids like Prednisone can cause changes in blood pressure etc and for me it did increase my palpitations. Best to make sure that you don't have an underlying heart condition though. Hopefully you don't and that it was just from the steroids (IV ones or Prednisone).

Even if you have mild inflammation it can slowly build up scar tissue over time making a section in your intestines more and more narrow (stricture) and can cause blockages and could eventually lead to surgery (hopefully not). I hope you can find something that works for you to help get it under control. Keep us posted.

Jennifer said:

I'm sorry you've been having a hard time strawberrys78. It can take a long time to learn everything there is to know about Crohn's (if that's even possible cause there is a ton of information and there's new information all the time it seems). I've had it for about 23 years now and I'm still learning.

During a flare a great go to diet is the low residue diet. You can make just about any meal low residue. It allows a little dairy depending on how you respond to it (not a lot though, that includes cheese). No seeds or skins and no popcorn. Chicken is ok but many find that the white meat (chicken breast) is easier to digest. How you prepare the food also plays a huge role. Baked, steamed, boiled (has less nutrients than steamed though) etc is ok. Nothing fried and many have mentioned more symptoms from charred foods (BBQ). The point is to choose items that are easy to digest. If you find that certain things bring on more symptoms then you cut those items out of your diet (this is why many mention keeping a food diary to help you keep track).

As for medication, so far you've mainly been treated with Mesalamine (Asacol, Pentasa etc) and those medications were created for reducing inflammation in the colon for people who suffer from UC. These medications are topical meaning they help with surface inflammation but Crohn's disease can cause inflammation deeper in the intestinal walls. So you have Crohn's in the small intestine, Mesalamine meds aren't going to do very much for you. http://www.crohnsforum.com/showthread.php?t=50253

The Imuran was a good try but it didn't work for you (or maybe it would have, your symptoms could have also been a partial blockage instead when the dose was increased). Purenthol (6MP/Mercaptopurine) might be something else to try as it's similar to Imuran (a low dose of Allopurinol can be added to a low dose of 6MP to make it less toxic if 6MP alone isn't working). Other options could be Methotrexate, Humira, Remicade, Cimzia, LDN etc. Finding which medications or combinations of treatment work for you is all trial and error.

As for your heart rate and the palpitations you were having in the hospital, I'm wondering if that was because of the steroids. Steroids like Prednisone can cause changes in blood pressure etc and for me it did increase my palpitations. Best to make sure that you don't have an underlying heart condition though. Hopefully you don't and that it was just from the steroids (IV ones or Prednisone).

Even if you have mild inflammation it can slowly build up scar tissue over time making a section in your intestines more and more narrow (stricture) and can cause blockages and could eventually lead to surgery (hopefully not). I hope you can find something that works for you to help get it under control. Keep us posted.

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Thanks so much for replying!! I find it hard to know when I am even going through a flare. Before, I would just eat something bad and get diarrhea then I would feel fine. What constitutes a flare? Like when should I eat things that are easily digested? And also, how do I know if something is hurting me? Diarrhea, cramps, etc? Is it true that certain foods can be hurting me without me even knowing it? That is what I am scared about. This morning for breakfast I had an egg fried in a little olive oil and two slices of homemade white bread with a small amount of butter. That was only a half an hour ago, but I seem fine so far (those items never gave me diarrhea in the past). This is such a confusing disease lol!!

If I eat something, and my stomach begins to make a lot of noises like almost like it is coming from below my belly button, and my stomach just feels really swishy on the inside.. (lol weird way of explaining it), does that mean the food I ate isn't good for me?

I would note it down on anything you eat. Each Crohn person have different food trigger. There a section on this site where everyone post the common food trigger. I feel your pain, I'm currently in the hospital dealing with an infection and flare up. Just hang in there and keep your head up.:ghug: