Diagnosed with Ileitis

[avail]

I'm freaking out here. Over the past several weeks, I have been experiencing what I thought were muscle aches in my lower back. They eventually got worse and moved toward the center of my lower back around the tailbone area, giving me the feeling of having to evacuate constantly. I found myself straining and realizing that I didn't actually have to go. I saw my GP who sent me to the ER with possible appendicitis (I had pain in the region, turned out to be gas). The MRI showed my lower intestine to be swollen. I've been given a preliminary diagnosis of ileitis and put on a cocktail of Flagyl and Levaquin.

I have yet to be diagnosed with Crohn's and I find it hard to believe that this is what I have. For one, not in my life have I at all displayed symptoms consistent with typical (or even atypical) Crohn's other than this one instance of small intestinal infection. I'm otherwise very healthy.

I recently changed my diet to one that is heavy on carbs for weight training. Particularly, I eat about a loaf and a half of wheat bread every week. Recently, I've been having skin issues that I've never really experienced before, mainly dryness around my hands, elbows, and scalp. I also have had sores in my mouth most of my life which the doctors haven't really given a good explanation as to where they come from. I've complained about chronic fatigue since I was 13 or so years old (I am 26 now). I have been diagnosed with a hiatal hernia in the past, but I have not felt anything from that or the associated GERD in years since I lost weight through intentional diet and exercise.

My main question is: Can I have Crohn's with only one instance of possible ileitis in 26 years and no other symptoms? I understand that chronic ileitis is technically Crohn's, but this is only once. Can I have ileitis and not have Crohn's at the same time? Could it be Celiac Disease or even just a bad luck type of infection?

The doctor isn't telling me anything and I haven't even gotten an appointment for a colonoscopy/endoscopy yet. A little direction would help my nerves a little. Thanks so much!

 

[Kev]

Hi Avail. I can understand why you are freaking out. I can also hazard a guess as to why your doctor isn't telling you anything. Think it's way too early to hazard a guess. The reasons? You've covered them yourself. sudden onslaught, atypical history, diversity of symptoms, and only enuff evidence for them to say 'ileitis' .thats a term they probably wouldn't use if they were certain that it was 'crohn's'. Inflamation of the ileum could be anything, and it may resolve itself. The fact that your symptomology is more acute than crohnic is not standard, and could well be indicative that you dont' have classis crohns. But that is totally a wild assed guess on my part, and I'm no doctor for sure. If I can offer you any comfort, EVEN if it turns out to be Crohns, it's not the end of the world. Checkout some of the folks on here, and you'll soon discover theres life post diagnosis. Anyway, you and your doctors seem to be on top of this, if I might suggest anything, you need to look at establishing a better way of dr N patient communication. The questions you posted here are bettter asked of your doctor, AND his/her silience is not an acceptable answer. Heres' hoping it turns out to be a non chronic type of inflamation that is easily & readily cured.

 

[avail]

Thanks for the reply! You're quicker to respond than my doctor, that's for sure haha. I have my next appointment tomorrow.

What I failed to mention is that I work for a pharmaceutical company on the research side, so I've had access to several MDs, former RNs, and pharmacists in these past few days. The concensus amongst them is that it's either an isolated incident or something more along the lines of Cileac. One of the MDs is convinced it's not Crohn's.

I'm just terrified of the worst case scenerio because we recently lost a coworker to Crohn's. My job requires very frequent air travel, and she just couldn't deal with it anymore. I love what I do, and having to quit due to illness would be absolutely heart breaking.

I also forgot to mention that I have not even had diarrhea, nor have I had a history of diarrhea (chronic or otherwise) since I lost the weight (down to 165 from 180-something. 150-something before I started lifting weights, I'm only 5'8") and cut out dairy from my diet.

thanks again for the quick reply. I've decided to maintain my current diet, minus the overloading of carbs. I figured if I'm going to get tested for anything, I should only make changes to my diet after I have a clearer picture of what's going on so as not to scue any possible results.

 

[Kev]

Your welcome. My patient load is probably way less than your doctors. Just me and the dog. And he's healthy. Couple of things you've said that I'd like to pick up on. From the outside, Crohn's may seem like the worst case scenario. But take it from someone on the inside. Though I wouldn't wish this on my worst enemy, its not the 'worst' case. There are any number of diagnosis's that would be "MUCH" worse. Believe me, I've had the fortune (whether good or bad depends on your point of view) to witness folks suffer much worse issues.

Second, whether the long term outlook involves a passing thing, or a chronic one, in the interim you have inflamation of the ileum. Maintaining your regular diet is probably not the best choice. You need to take into consideration that your ileum is under a lot of stress. Modify your diet, on the advice of experts, to reduce to the minimum the stress it is under. I would suggest the "MOST" stringent diet they recommend, and sticking to it religiously until a firm diagnosis is made. Think crohn's is the worst case scenario? How about if what you have now becomes long term, irreversible, because you neglected to treat it seriously. Living like a monk for a short period may actually prevent that, OK?
Don't sit on your hands about this. Talk to a nutrition specialist ASAP and diet as they recommend. The ileum you save could be your own. Friendly warning.

 

[crohns4]

How do i post please can you help me a message on this board. Thanks

 

[avail]

Thank you, sir.

I meant to say, worst case as far as what I consider to be the strongest three possibilities (Crohn's, Celiac, random infection). I'd like to believe I have a zero percent chance of some sort of cancer or any other nefarious malody, but I'd never get anything done with my life other than worry if those were a serious consideration.

Today's diet consisted of whey protein powder, tuna fish, and half a muffin. I think I'm going to get steamed veggies on rice for dinner. The doctors have not recommended any diet changes, but I have made certain modifications. Again, the confusion is my fault as I simply meant I'm not going to go gluten-free just yet.

The pain has more or less subsided in my back. There are a few attacks, mainly before a bowel movement or if I have gas. However, it's not constant anymore. As time moves on, the BMs are also much easier. When I first did something about the infection, it was so swollen I couldn't pass anything. I'd say I'm about 90% after only four days.

What's really been the worst thing about all of this is the myriad of side effects from the Flagyl and Levaquin (sp). I see blue flashes in the left peripheral of my left eye. I'm getting kind of bad joint pain in my left knee, right elbow, left hip, and right shoulder. My calves are incredibly weak, and now the weakness has moved to my wrists. Add to that the insomnia and general dizziness, and it really just feels like I have the flu now. The doctor told me to stay on it until I see him tomorrow. He says these side effects aren't consistent with what I'm taking, but Google begs to differ. Ugh. Things were a lot easier for me a week ago. Not that I should complain, yet.


Let me ask you. I cooked a steak a few weeks ago and I definitely did a terrible job of it. I know I ate a fair amount of raw meat. The doctor said it would've made me sick almost immediately. but could an infection from that have started in my small intestine and just lingered for weeks??

 

[Kev]

Hey Crohns4. Looks like you got the hang of it. You could try the FAQs for further info.

As to you, Avail. Glad you cleared that up.. I won't argue the points of Celiacs Vs Crohns.. As for a passing infection, that would be the best possible scenario. The undercooked meat... well, again, I'm no doctor, so don't place a lot of confidence in my strictly un-educated guesses. I think the doc is right on the viral or bacterial possibilities of eating undercooked meat. You should have experienced problems within hours, days at the latest.. However, meat can be teaming in other organisims... varoius types of worms, etc.. It just isn't wise to eat anything that isn't thoroughly or properly prepared these days. I haven't a clue what a potential worm problem would present in the line of symptoms. It's conceivable, I guess. Would/could it cause inflamation of the ileum? Beats me.

As for your diet, welllll... veggies, fibre, all of those things that are good for you when healthy get kicked off the list when you have gastro-intestinal issues. I'm on a low fibre, low fat, low residue, low lactose, hi protein diet that just sucks!
Fibre, ruffage (sp?), fats, pits, seeds, skins, pulp, raw veggies, raw fruit, they all go by the wayside as long as my ileum or colon is inflamed or ulcerated. It takes a dietician or nutrition counselor who specializes in IBD illnesses to put you on the right track. A lot of doctors, even GI's, place little faith in diet N IBD. I don't know who will win that argument eventually, but I believe most on here have learned the hard way from personal experience that diet does play a part

 

[avail]

Yeesh! I've been eating cinnamon bread and peanut butter. I've only been feeling better since the incident, but I shouldn't push my luck. I'll stick with my tuna, protein powder, multivitamin, and oatmeal until I get some real answers. While I feel like absolute crap from the meds, my BMs are regulating and my pain is subsiding, so I know I'm getting better. Time to just pray that I dodged a bullet here. If the blood tests and colonoscopy turn up something, then I'll just have to deal with it like everyone else here.

Thanks so much for your quick and informative responses. You've done more for me than my doctor has so far. That's the crappy thing about living in a major city, I'm just one of thousands to most doctors (not to say Halifax is small, just in comparison to Philadelphia).

And sorry if my thoughts come off as scattered. The meds have made it impossible to concentrate, on top of constant dizziness.

 

[katiesue1506]

boneless skinless grilled chicken is good too... its about all I eat...that and rice.

 

[Brando]

it's very possible that the overloading of carbs could have triggered a sudden growth of bacteria in the intestinal tract since most of them thrive on sugar. i would only be concerned if the levaquin and antibiotics don't clear it up. although i'm not a doctor, if i take antibiotics i also take some sort of acidophilus supplement after the course of drugs is over to replenish good bacteria.. could help you out.

the sores in your mouth are of some concern.. crohn's can happen at any point in the digestive tract and sores in the mouth although not very common do appear in some cases. however, i would lean more on the side of celiac seeing as how you are having problems right after carb loading. carbs aren't necessarily bad but if you are having problems right after eating bread or grain/wheat products i would get it checked out for sure.

hopefully it's just a small infection that will be cleared up. if the antibiotics don't get rid of it then take the next step of getting a celiac sprue screening from the doc and possibly a colonoscopy.

btw, first time i started having crohn's problems was after eating raw fish.. so i believe that underprepared meat is a very possible cause for the onset of symptoms. the intestinal tract is a tricky place tbh.. i believe it is possible that you could get a small amount of bad bacteria in and it not cause problems for a little while until it finally grows into a threat especially if it coincided with your carb loading which would give it ample food to thrive on and possibly overcome the defense mechanisms that would kill a small amount off especially if they were already weakened by diet and past illnesses. common sense would lead me to believe this is possible anyways.

 

[avail]

Thanks. This morning, I went to the bathroom and everything was 100% back to normal. I'm also experiencing pretty much zero pain. I'm completely exhausted, but that has a lot to do with the Levaquin preventing me from sleeping (despite being on Lunesta).

This may just be coincidence, but since I stopped eating so much as I'm waiting for the go ahead to go back to the gym, my scalp and hand issues with dry skin have subsided dramatically. Again, it could just be a coincidence. FYI, I've been getting the sores since I was 3 or 4. The doctors assumed I got a herpes-like viral infection when I had bacterial meningitis, but there are times when it flares up noticeably. I will also get one if I bite my lip accidentally. Either way, I'm feeling pretty good. Yesterday was the first time I've felt really good in a few weeks. My GP is doing more blood work this afternoon and I'll be sure to tell him about the carb loading.

Thanks again, everyone. Your insight has really put my mind at ease. There are a few other things that lead me to believe it's the carbs that are hurting me, mainly a pattern of work-loss and diet. This really is a puzzle that is coming together, but I'm not going to burden you with a novel. You can watch House tonight for that haha.

 

[avail]

Update:

After going over my diet and medical history with my doctor this afternoon, he's also skeptical as to whether I have Crohn's at this point or even Celiac. He said I have a fair chance of just having a random infection.

He also said celiac and ileitis are completely unrelated. So, basically, I'm symptom free and always have been symptom free other than the painful small intestines from the infection. I have to get a colonoscopy and an endoscopy, so I guess I'll find out for sure soon.