Help! Crohn's symptoms but no Doctor!

[mantar19]

Hey all,

Wasn't getting a response in the members only area so I am posting here. I'm 24 years old, male, recently been having some symptoms of Crohn's disease.

My Story -

A month ago, I got a sharp, sore pain located around the liver and wouldn't go away for a week. I got it after having a really greasy burger with a beer for lunch. It especially hurt while breathing (5-6/10) and started during the walk back to the office. I don't drink a lot so I was perplexed. I went into the ER after finding no relief for a week. They did a CT scan and ultrasound to see if it was appendicitis or gall stones. They didn't find anything other than a slightly swollen liver. The doc said it was just because I'm a tall, big guy and discharged me saying that I should stay away from fatty foods and get more fiber. I thought maybe my swollen liver could be from "drug induced hepatitis", as looking back on it, the night before the pain I took a double dose of Advil. This was to kill a pain I was having in my back. The back pain went away, but I took it on an empty stomach and figured that the NSAID was what caused my liver to have an adverse reaction.

Well, I did what the doc said, and switched from a sort of typical American fast food kind of diet over to a "healthier", "leaner" diet of whole wheat, white meat, and vegetables for the next couple of weeks. I was getting lots of fiber, the pain went away and I thought everything was good. Well, my birthday came around on the 2nd and was a "treat-yo-self" Tuesday, so I went to Red Lobster for lunch. I ordered some trout, diet soda, as well as steamed broccoli. 4-5 hours later, BAM!, sharp pain right where my appendix is and it pulses for 2-3 seconds before disappearing completely. (8/10 on pain scale) This little "flash" happens maybe 8-10 times an hour. I go for a day without it changing, and I fear the worst - appendicitis. I go in to the ER again and they look like I'm wasting their time. There is no pain when they press on my gut, no fever, no nausea or vomiting, no real diarrhea to speak of. My white blood cell counts and electrolytes were perfectly healthy. They discharged me with a prescription for Ultram, a pain medication. I didn't want anything to do with it as the side effects looked lame and strengthened by asthma (which I had as a kid). I toss the papers, go home, continue to eat fiber based diet thinking it was too much greasy fat at the restaurant (greasy fish, Red Lobster biscuits, etc).

Needless to say, the "flash" pain went away and turned into a constant soreness, kind of like a muscle pain in the same area. I began thinking I might have strained my abs from lifting furniture, and that it wasn't digestion related at all. I decide to eat more protein... within a few days the pain returns as strong as the flash, about a 7/10 and only occurs a few hours after I eat something. I got scared and switch to a bland diet of white rice, apple sauce, juice. The pain stays and diminishes slightly, so now I'm on a clear liquid diet. I've nixed the caffeine and citric acid as well. It is now day 4 of my CL routine of water, apple juice, broth, and jello. It isn't fun, but the pain is down somwhere between a 1/10 and a 3/10 depending on the time of day and am able to go to work just fine.

My problem is I don't have a primary care doctor as I just moved to this area and when I called a GI directly, they couldn't get me in for over 2 weeks... which is ridiculous. I don't know if I should go to the ER again and see what they can do as I don't feel like it's an emergency. The CL diet is just killing me energy wise, I am constantly hungry and wanting to sleep all day. Don't know if I can go a whole week on this. I have an appointment on Tuesday with a family doctor in the area (soonest I could find). I now look at the 8 pages of that Ultram prescription the doc gave me a week and a half ago and see that she indicated on the last page that I should be on clear liquids and in bed this entire time... why she couldn't have made that clear before discharging me?

I'm thinking Crohn's. I look at the symptoms and find myself checking a lot of the "serious" ones off, but less of the common ones off. It's weird. The previous swollen liver, a toenail that might be clubbing, pain at my ileum when I eat, mild diarrhea if I eat small meals without any fiber, a sore in my mouth... but... I don't have nausea, vomiting, anemia, blood in BM/urine, fever, or any of that.

A month ago I was able to eat an entire pizza, do Irish Car Bombs if I wanted, and feel 100% fine. I don't understand how this happens...I try to eat healthier and I get wrecked. I'm afraid eat anything now. What should I do?

 

[KayleighMeek]

Hello sorry to are having a rough time at the moment. How long would it take you to get a primary care dr in this new area? I guess you are in the US and I'm not sure how it works there here we just go to the local Dr surgery and fill out a form and then you are registered. I know 2 weeks seems like a long time to see a GI when you are sick but most of the time people have to wait a few weeks to a month for an appointment. If I was in your position I would book an appointment with them if its possible and then at least you have something with a set date.
Did the ER dr ever say anything else about your swollen liver? Have you had it checked again?
Hope this helps a bit and you can start feeling better soon

 

[mantar19]

It felt as if the swollen liver pain had left me completely after about a week. During the second visit they didn't recheck for a swollen liver as the pain was lower, right over my appendix. Rather than do another CT scan or ultrasound they decided to only do an x-ray to check for blockages, kidney stones, and anything else they might find. Needless to say they didn't find anything. When I went in I wasn't experiencing any diarrhea at all so that's why I think they ruled out Crohn's then. I pretty much had "normal" BMs all that week, they were full, maybe slightly loose, and occurring only once, maybe twice a day.

Since the doc didn't tell me in person to go onto clear liquids, I continued to consume a high fiber diet. I was eating wheat Subway sandwiches with spinach and felt slightly better, even burgers I felt slightly better. It was a dish of just plain diced chicken and black beans that finally made the pain set in for good. The pain was back, I was scared, even though my BM was good. The transition from high fiber food to bland low-fiber/low-fat foods to a clear liquid diet started the diarrhea and I've been on liquid for the past 4 days.

Finally seeing a primary care doctor in 3 days (Tuesday), but I don't know what all he can do. Should I go back to the ER? Will a clear liquid diet be okay for the next three days? How long before I go malnourished?

 

[KayleighMeek]

The primary care dr might arrange for blood tests to be done and depending on what they think is going on refer you to a GI or another specialist department that may be able to help you.
If you are struggling with pain when eating a lot of people on the forum in America buy ensure as it has all of the nutrients and calories you need.
What makes you want to go to the ER? Have you had an increase in pain or symptoms? If you do get worse and you have an increase in either of these things it may be worth getting it checked out.

When you see your primary care dr make sure you let them know everything that has happened and what the ER dr's have said as well.

 

[mantar19]

Thanks for the quick response! Ensure? Is that the meal replacement drink for kids? I thought it would be bad if it's Crohn's. I read that dairy / lactose was bad and always thought that Ensure was a milk-based drink? Maybe I'm wrong. I'll check it out, thanks.

To answer your question - the thing that makes me wonder if I should go to the ER is that I've never had this happen before in my life. I've had a pain here or there that always went away. This is the first time anything has lasted more than a week, and the first time it's hurt to eat anything. I don't know if this pain I'm having is actually inflammation doing irreversible damage or not. There hasn't been any blood so that's good at least. If this truly is my first Crohn's flare I'm completely new to it and don't know what's considered "normal inflammation pain". I see everyone taking all of these different medications, talking surgery, illeostomies, and it scares the **** out of me! Almost literally!

Being in a new location for a job with no family or friends around isn't helping. I'm just completely alone, confused, craving for some answers as I wait for things to possibly heal and my doctor's appointment.

 

[KayleighMeek]

Ensure is a meal replacement they do for adults and children I believe you can get clear ones or the milk type ones.
Try not to jump to conclusions wait to see the dr and they will be able to start getting things figured out for you, it could end up not being crohn's which I hope for you and its something much simpler. This website can seem like it has a lot of scary stories but it is very different for each person and not everyone has the same experiences.

It must be tough for you I moved away from home when I was young and it really was a struggle. Maybe you could call a friend or family just to have a chat about everything it may make you feel less anxious about the things that are going on.

 

[mantar19]

So I went to the primary care doctor. He seems to think it isn't Crohn's and of course told me that I was just scaring myself into a inconclusive self-diagnosis. (figures) But, with that said, he showed me my previous CT scan and said there wasn't any inflammation found and that my liver was not "swollen" or "inflamed" like I thought. He said it was simply enlarged from there being fat in it, hence the reasoning being that I'm a big, tall guy. So he told me to take it off my symptom list for Crohn's. With that said, I still have a history of getting a sore tastebud in my mouth 4-5 times a year, a toenail that might be clubbing, and some weird skin bumps on my thighs. I've never really had a history of diarrhea and would only get it after eating a larger buttery popcorn and diet soda at the movies. Could Crohn's really come up so suddenly? Maybe these symptoms are all scattered and completely unrelated to my abdominal pain, who knows?

He is sending me to a GI, and an appointment has been made for August 8th!! It's crazy how long it takes to get in. Maybe I should have elected for the earlier 24th appointment when I called last week. Oh well, maybe someone will cancel. I really hope the GI can find out what's wrong with me from a simple X-ray, barium, or CT scan. I really do not want to get a colonoscopy. I didn't know they that they put you to sleep for it?

Doc also gave me a year-long prescription for Bentyl. I've read some very mixed reviews about this and am scared to take it. I haven't moved up from the clear liquid diet just yet, starting to add in full liquids right now and hoping to transition higher as the days go on. I've lost a whopping 22lbs since starting the bland/CL diet. Craziness... that's almost 2-3lbs a day!

Does anyone have advice for taking Bentyl? The side effects sound bearable but also completely terrible... not exactly something I want to go through while at work at a desk job. Thoughts?

 

[KayleighMeek]

I would go by your Drs advice and try not to panic about what is going on as he said self diagnosis isn't a good idea.
Did he say anything about the levels of fat in you liver? Everyone has some fat in their liver but it does get to a point when it can be too much.
I have never taken bentyl but all drugs have scary lists of side effects but they are usually rare and people take them with out a problem. If you feel they may help with the stomach pain then maybe give them a try as it could solve the problem for you.

If you are on a liquid diet and you are a "big" guy you could lose a lot of weight quickly this doesn't put it down to it being crohn's.
Hope you feel better soon

 

[Jennifer]

Glad you have an appointment to see a GI. That's actually a pretty quick appointment too as often times it can take up to 3 months or more to get in and be seen.

To diagnose Crohn's disease a colonoscopy is needed. Its the biopsy results that usually tell what's really going on especially in cases of microscopic inflammation and being able to see Granulomas. You can be put in twilight (sedated but not asleep yet have no memory of the procedure) or if that type of sedation doesn't work on you then you can request to be fully put to sleep (this will have to be done at a hospital setting so you can be properly monitored) yet there are many out there who prefer to be awake so they can see their insides on screen. The choice is yours but for a Crohn's diagnosis it is needed.

I've never taken Bentyl but know its often prescribed for people with IBS to try and reduce spasms. Its up to you if you want to try it to see if it helps at all.

Crohn's can come on suddenly with very little warning. My most recent flare reared its ugly head in less than two months. When I was first diagnosed we all thought I just had the flu yet had a very rude awakening when the toilet was suddenly full of blood (not everyone has blood in their stool, nor does everyone with Crohn's have nausea and vomiting or diarrhea even. They can be classic symptoms but aren't required).

For now try not to worry. Ensure Clear has very small amounts of lactose and is ok for people with lactose intolerance (such as myself) to drink. You can also make your own broths with vegetables and meat and strain it to avoid eating the solids to try and get more nutrients that way. When you do reintroduce food make sure its soft and bland (nothing fatty, salty, spicy, full of sugar etc). I personally follow the low residue diet during flares. Also many members have mentioned diet drinks causing diarrhea (I know they do for me) so might want to cut that out as well as juices that are mainly full of sugar and preservatives as they will also cause diarrhea and bloating/gas (too much sugar feeds the bacteria in the gut which creates more gas build up).

Keep us posted on how your GI appointment goes. Also feel free to check out our undiagnosed section here: http://www.crohnsforum.com/forumdisplay.php?f=75

 

[UnXmas]

In the UK on the NHS, you wait a lot longer for appointments! I know it's very frustrating when you seem to be on waiting lists all the time, but unless you have symptoms which indicate something that could cause immediate harm, you do have to wait a while unfortunately.

The ER really is for emergencies. They don't often have the time or expertise there to understand your whole medical history and assess which tests you need to diagnose a chronic illness. That is usually done by a consultant. However, do go to the ER if your condition changes and you get sudden severe or serious symptoms, especially things like a fever or diarrhoea and vomiting to the point you get dehydrated.

If your symptoms do continue long-term, you will find you gradually learn how to cope with them and the things that help you. It can be overwhelming when you first become sick and want answers, but diagnosing an illness can be very complicated. There are a very large number of medical conditions that could cause your symptoms. I really wouldn't recommend trying to self-diagnose or decide what tests you think you need. Whilst it can be helpful to read up on possible causes and tests, I think the best way to find what's wrong with you is to try to find a doctor who you trust and who listens to you to make decisions about tests and treatment.