First hospital stay due to flare

So I am new to this forum and wondering if anyone has had a similar experience to me at all. I started having issues back in Nov. 2008 and doctors chalked it up to stress and IBS. Issues that included horrific stomach pains (mostly right side) and puking until I emptied my entire digestive system, on and off, for years – and none of them would take me seriously. Finally early last year, I found a great doctor who started tests on me and concluded that I had inflammation in my small intestines. I never had “classic” crohn’s symptoms… no D - usually constipation, horrible spasms and pains, and then like a back-up where I get nauseated and need the food out and just vomit, vomit, vomit. He prescribed me Lialda and I’ve been living since then with pains/spasms every now and then, and a puking episode every month or every other month. I’ll admit, I did not take my medicine religiously because I felt like it wasn’t working. I was almost in denial. When I felt good, I just wanted to forget that I had that I had this horrible condition. I’m in a really intensive school program (dental hygiene) along with working and juggling everything else, I forget to take care of my health. Anyway, Crohn’s landed me in the hospital last week. It got so bad that I had 100.8 fever, couldn’t walk, couldn’t move, etc. (sure most have you have been there). I was pumped full of saline, cipro, flaygil, dialudid, zofram, and eventually a k-rider for my low potassium (hopefully spelled some of those correctly). My ct scan showed that I also had some fluid or an abcess near one of my fallopian tubes which was a little added bonus so they gave me 48 hrs of more IV antibiotics. They did a small bowel on me again which showed the inflammation still near my small intestine (took forever to finally reach my colon, I was in there for 3-4 hours). So now, I am back home currently still on the Lialda and now Prednisone 30 mg for 10 days. I’m 30 years old 5’3, 115 lbs, and in the gym 4-5 days a week so this bloat is killing me. Also, I feel hopeless… I know this is a temporary fix. I’m scared and depressed that another flare is just around the corner. Anyone have similar symptoms to mine? What helps? Anything holistic on top of the meds?? I can’t seem to figure out diet… gluten/lactose does not seem to bother me, but raw veggies and fruits with skins and definitely do. Onions are a nightmare and for some reason, so is any Thai or Chinese food I’ve had. I’d appreciate any input!

Thanks for the response! Are you in remission now or still on the meds?

I agree with you kix, crohns is not fun. Sorry to hear about your suffering Kal but you will get better. I'm currently taking asacol and have been on meds for many years (first diagnosed with colitis and then crohns). It's real important to stay on your meds. My main problem is nausea and weight loss (and fatigue). I found these organic protein shakes that are great, made by a company called Svelte, gluten and dairy free. Nuts are definitely out of the question for me & raw veggies too.

sparkle, I've been curious about acupunture and I may look into that myself. Better days are coming Kal.

@sparkleplenty how often do you do acupuncture?

Thanks for the words of encouragement @dawn227... just wondering if you substitute some meals for the protein shakes you mentioned? I was researching juicers today and thinking about trying at least to juice for breakfast to get some more nutrients without it being so harsh on my system.

@nicecupoftea I looked up Lialda and wondered the very same thing when I was prescribed. I'll ask my dr about the other maintenance meds you mentioned at my follow up apt on Mon.

I see an acupuncturist every 1-2 weeks. We have a community acupuncture place that is on a sliding scale. I don't have to go through insurance and it's cheaper than my copay would be if I did go through insurance.

Replacing one or two of your meals with smoothies or doing juicing might help. I have a smoothie for breakfast every day, but if things are bothering me then I will have one for dinner too. Soups can also be good. Liquid diets help give the intestines a rest.

Hi Kal! Welcome to the forum. This is actually my first post on here, but I've been cruising around here the last few weeks as well as crohnsforum.com.

I can actually relate to you a great deal. At about 15 years old (almost 15 years ago) I was taking full time college courses in high school doing a running start program. I was eating poorly and extremely stressed when I had my first ER visit. I ended up having horrible horrible pains that just came on, I had to crawl to the bathroom. A bowel movement didn't relieve it and it kept getting worse. I was hunched over screaming in pain for a few hours before I vomited a great deal and when I finally stopped, I had my mom drive me to the er. They found fluid in my abdomin and said I had a an ovarian cyst burst. I do have a history of these, but this was the first one episode of many. Each year I would have at least one episode like this, possibly 2.

In 2005 a GI gave me a colonscopy and flirted with the idea of Crohns but said my bowels looked good and I had no other symptoms accept these random attacks in my small bowel.

I learned I had food allergies, avoided those (gluten and lactose are two of many) and I felt great. I had a few flare ups after I had a baby in 2011 so decided to see the GI. He gave me a MRI and small bowel follow through and found scar tissue in my small bowel (where they can't see very well in a colonscopy. I had a small bowel resection in May and have been dealing with about 8 bowel obstructions since then...two of them i was hospitalized for, the others I vomited up everything before finding relief and dealing with it at home. Im now on 30mg of prednisone until my doc and I decide on a med. I only tried Pentasa and Enticort for a month and it obviously hasn't helped, but I want to have more kiddos so were talking about Cimzia, which is quite a skip from other meds.

Like you, I did not have the most talked about symptoms, but yours sounds like its in the small bowel where your food is digested,etc. I still am in denial as I've only been treated for a crohns for 2 years and have had many years with remission. I havent had trouble with diarrhea or weight loss and like you, it's all about the bowel obstructions and getting sick. I'm afraid of food at this pint though, since I have allergies I'm restricted to fruits and veggies and rice and nuts. Most of these I have avoided right now as Im on a low residue diet to give my bowels a rest.

Unfortunately for me, there was no test I took that went off positive for Crohns, i think I still would be in denial if it did. I still think Im celiac, but that came back negative too just gluten intolerant. I have had no experience with Lialda, but have researched a lot of drugs and I was pretty sure this is a drug like Pentasa but is used for the Colin and rectal area? You may want to ask about Pentasa depending on the severity, as this was the first one I was put on and it was to release in the small bowel.

Good luck and let me know how you are doing! Like you, Im still trying to figure out how to deal with my a crohns and finding a good med to help get me in remission is my first priority. Then I'll figure out possible natural ways such as diets to help me.

I had a follow up with my dr today and just by pushing on my abdomen, we could tell the swelling was gone so the prednisone seems to be doing its job right now. We did discuss longer term options though, he mentioned encourt and then those 3 biologics humira/remicade/cimiza. Obviously he doesn't think I am a good candidate for surgery at this point, but who knows what will happen in the future. My inflammation is all localized right at the end of the small intestine near the illeocecal valve. It kind of bothered me that I had to mention pentasa per the advice I got on here, and he was like "yes that would be a good option for you considering where your inflammation is".... They searched for a discount card for me since it is so expensive and I'm a student again, but had no luck finding one right now so he'd like to keep me on lialda which seems kind of ignorant to me. I am going to take it, but I don't see what good it is doing me. @desiree1 I hope you find a med that works for you too! Let me know what your dr decides.