So I was diagnosed today...

What's up my (now) fellow Crohnies. I need some help.

First, the background story...

After suffering from some mysterious cramps in my lower right quadrant and on-and-off fevers for about two weeks, I decided in early May that I'd go see a doctor to check up on these symptoms. He sent me to take a CT scan, in which the doctors found that my appendix was extremely large. They had never seen anything quite like it. They told me I needed to go to the ER right away, and I obliged. After showing my surgeon my CT scan photos, he informed me that I needed an appendectomy (removal of the appendix) immediately.
What was supposed to be a 45 minute laparoscopic surgery quickly turned into a four hour open appendectomy with an incision of about five inches when they realized that my appendix was too large to remove laparoscopically and that my colon was also inflamed. The surgeon said that it looked like I had Crohn's Disease.

I refused to believe this and convinced myself that I instead had chronic appendicitis. I stayed in the hospital for seven days recovering from the surgery, not eating or drinking until the last two days. The recovery was pretty brutal with intense abdominal pain that restricted my breathing and intense nausea and vomiting of stomach bile. At one point, they decided shove a tube all the way from my nostril into my stomach to pump out all the juices in my stomach just so I could get a decent night of sleep. I eventually recovered, and I finally got my JP tube and 15 staples removed today. After a pathology test taken on my appendix, however, it was confirmed that I have Crohn's.
I'm really lost at this point. I've done quite a bit of research on the disease since I've been home, and I'm blown away by the severity spectrum of the illness. Before the two weeks of cramping and fevers, I've never really had any issues with my bowels - I was always a really "gassy" kid and a little bit lactose intolerant, but other than that I never had any real issues.

Now I'm in quite a predicament - I don't really know what to do with myself. My doctor told me I should follow up with a GI doctor immediately to start treatment, but I have an internship four states away that I'm supposed to fly out for in three days. I've already delayed the start day by a week because of my surgery and I can't delay it any more without giving up the job. I'm a 21 y/o male in college, and internships are really priceless. I also don't want to be stuck in an ER without my family. I'm currently not suffering from any symptoms other than some surgery recovery - related soreness. I'm eating fine, using the bathroom fine (although more frequently), and I only feel a little fatigued. I'm down 15 pounds of my normal weight though; I'm 5'8'' and 130 lbs which is the lightest I've ever been and I hate it. I also get some occasional mild cramps in either side of my abdomen. I guess overall, since my surgery, my Crohn's is mild and maybe even in remission (?).

At this point, I really don't know what to do and I'm reluctant to listen to my parents because I don't think they grasp the intensity of the situation. It's all too real for me right now and I'm trying to keep from getting too worried or stressed because I know it doesn't help Crohn's.

So, I guess this really is me just reaching out for some advice and help. Anything works, I just want some advice from people that know what I'm going through.

Thanks so much guys. This means everything to me right now.

Welcome to the forum, I'm sorry you had to find us. Unfortunately, you are not in remission if your colon is inflamed. If you do not get treatment for it, it will only get worse, and can turn into ulcers. Weight loss can mean that you are not absorbing nutrients. Have you had your vitamin levels checked? Has your doctor talked to you about diet? A low residue/fiber diet can ease symptoms. I went to a nutritionist. I did not have a lot of symptoms at first either, but went downhill very fast.

I'm thinking about getting some referrals and looking for a GI doctor at my internship because it's really not something I want to miss. I just went grocery shopping and bought (for the majority) Crohn's friendly foods as well as multivitamins and B12 supplements. Will this keep me sustainable for the two months that I'm out of state until I can see a GI doctor back home?

No Crohns friendly food isn't going to fix this.
You need a Gi doc ASAP
Having an internship but ending up in the icu ( yes it can't go south quickly with no warning)
Crohns comes first
You may find a Gi near your internship and surgeon may have a referral there
But you need to start treatment

Diet is very individual and can be added to a good med to help but the inflammation needs to go down first .

Most ibd centers will fit you in quickly if you were just dx.

Tagging crohninct clash jmrogers

Unfortunately I'm already at my internship so now my options are a bit more limited - I need to figure out exactly what to do out here now that I'm away from home so that I can effectively complete this two-month internship but also staying on top of my new diagnosis without having too much medical expense (i.e. I need to make sure I get referrals from my doctor at home, etc.)

Vanilsa,
Can you get your records and see a local GI? Not that steroids are great, but they may be a short term solution to get you through your internship... But you need to start treatment. If you end up in the ER again, your internship is going to be lost anyway...

I guess my main fear is that a doctor out here might put me on a medication that my GI doctor at home, who I'll likely see for a good chunk of my life, doesn't agree with for my diagnosis.

I'm sorry for all you are going through. I hope the start of your internship is going ok.

Have you looked into Specific carbohydrate diet or EEN mixed with a small bit of food? Studies and personal stories are posted on the forum diet section

I think you should continue with your internship if you can - as long as you can get good medical care there.

I guess my main fear is that a doctor out here might put me on a medication that my GI doctor at home, who I'll likely see for a good chunk of my life, doesn't agree with for my diagnosis.

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I wouldn't worry about this. It's a common situation. Many people see multiple doctors, and while that's usually because a person has more than one medical condition, it doesn't mean the doctors don't have opinions about the other doctors' decisions. I see many doctors, sometimes they disagree, but they're (usually!) proffessional about it. It can even be a good thing to be getting a second opinion. You're the patient - you're not responsible for the treatment choices doctors come up with. If one doctor doesn't agree with the other's choice, that's not something you should feel awkward about. If that does happen, hearing each doctor's reasoning should give you extra information to help you decide which treatment is best for you, which, while you need at least one doctor's input, will ultimately be your decision. Are you able to contact your home doctor by phone or email while you're away? Even though you'll probably need a doctor you can see face-to-face while you're away, maybe you can keep your home doctor informed about what's happening or even ask for his advice.

It sounds like all this has happened very fast and must be very stressful. Things should start to feel more normal again soon. As well as - hopefully - improving your physical health once you get treatment sorted, you should find things easier once you've had time to get your head round the diagnosis. I hope this will happen for you soon.

For what it's worth, I agree with UnXmas. I'd stick with the internship if it were me.

So you've probably got Crohn's. From now on, "Chilling Out" is your friend. "Stressing Out" is your enemy. Seriously, this is important. More important, I think, than diet. (Unless your diet is really SAD, maybe. Different problem.)

As for those who say, "Get on drugs now! Bad, bad things can happen to you super-fast! Meds, meds, meds!" Well, yes, that might be true. Probably not true, but might be true. Really aggressive Crohn's does happen to some people, doesn't happen to others. Keep in mind, here, that many of the worst Crohn's sufferers are on these forums. I mean, people with really, really tough cases. These are the "Saving Private Ryan", D-day folks of the War on Crohn's. They're the real veterans. But as in every war, there are also legions of folks who never see much action. Which one are you going to be? Only time will tell.

Obviously only you know what your insurance/income situation is, how important this job prospect is for your future, and where your body is at right now, so it's kind of dicey for any of us to weigh in with much useful advice about what you really ought to do.

I will say this. Don't let Crohn's own you. That's a bottomless stress whole if ever there was one. Try instead to find a way to go on living, and put Crohn's in its place as much as possible. Not easy, cause it's scary. But you know, Crohn's is a long-term, probably life-long disease. Finding a GI you're happy with, getting onto a long-term treatment plan, working through your insurance issues...these things aren't going to happen overnight even if you stay home.

One question for you: Did the surgeon send samples of your gut away for testing? He should have. In any case, if he visually diagnosed you with Crohn's (or probable Crohn's), I'm wondering why you can't just see your family doctor (or some temporary doctor in your internship area), tell him/her about your experience and the bind you're in with the internship, and request a mild prescription, such as mesalamine, just to get you through until you can arrange for more permanent treatment. There are numerous topical drugs like Pentasa, Apriso, etc., which are designed to do just that. Not a cure, but maybe a stop-gap measure. Don't know if that would work, or if it's even the right thing for you to do, but it's a thought.

**EDIT** Ah! I missed the part about your already being at the internship. Oops! Well...at least that's settled.

Gilliatt said:

One question for you: Did the surgeon send samples of your gut away for testing? He should have. In any case, if he visually diagnosed you with Crohn's (or probable Crohn's), I'm wondering why you can't just see your family doctor (or some temporary doctor in your internship area), tell him/her about your experience and the bind you're in with the internship, and request a mild prescription, such as mesalamine, just to get you through until you can arrange for more permanent treatment. There are numerous topical drugs like Pentasa, Apriso, etc., which are designed to do just that. Not a cure, but maybe a stop-gap measure. Don't know if that would work, or if it's even the right thing for you to do, but it's a thought.

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When I had my appendix removed, they did a biopsy on it and they found that it looked like Crohn's. That being said, I guess it isn't 100% official because I have yet to get a colonoscopy, which is why doctors in this area might be hesitant to prescribe me any drugs.

This is what my appendix biopsy report stated: "APPENDIX WITH A COLLARETTE OF LYMPHOID AGGREGATES AROUND THE MUSCULAR EXTERNAL PORTION OF THE MUSCULARIS PROPRIA. TRANSMURAL CHRONIC INFLAMATION IS NOTED. MUCOSAL ULCERATION IS PRESENT AND MULTIPLE GRANULOMATA ARE ALSO NOTED. THESE FEATURES ARE MOST SUGGESTIVE OF CROHN'S DISEASE OF THE APPENDIX. THE MARGIN OF RESECTION ALSO SHOWS CHANGES OF CROHN'S DISEASE."

To be completely honest, I'm not too sure what any of the above means, so if somebody could decipher it for me it'd be a huge help.

EDIT: I do have the report with me at the internship, so I would be able to show a local doctor the prognosis.

An amusing thought... You've just had an entire piece of your intestine removed and put under a microscope. Talk about a biopsy! That missing piece of you was probably a thousand times bigger than the pin-prick they'll take with a colonoscope. But...you're right, a colonoscopy would be a good idea. If nothing else, your GI's going to want to see how widespread the inflammation is. (Different drugs target different parts of the GI tract, for one.)

I understand that granulomas are among the key signs they look for when they do a biopsy. Think of it as a little bubble that forms around something your body doesn't like but can't get rid of, sort of a minuscule isolation chamber. Not everybody who has Crohn's gets them. You can read about them on Wikipedia (search Granuloma; entry includes a reference to Crohn's).

Ulceration is also something they look for. The mucosal layer, in case you don't already know this, is just the slick, slimy-covered interior of the gut. When that breaks down (ulcerates), you have a problem. Again, a sign of Crohn's.

This gets confusing, though. There's no easy, straightforward, fail-proof diagnosis for Crohn's. For some, blood tests come back negative, but there's narrowing, ulceration, granulomas, so...Crohn's. Someone else, blood tests positive, have ulcerations, but no narrowing, no granulomas, and so on, yet...still Crohn's. Then there's Ulcerative Colitis, similar but different. Tests can usually tell them apart. Also, I'm to understand that certain infections can cause similar symptoms. Your doc will know (read: ought to know) whether to suspect such a thing. One hopes, anyway. Mine seemed certain that I didn't have one of these rare infections, and that it was pointless to test for them.

If your experience is anything like mine, your doc will just have to look at all the signs, make a decision, and say it *is* Crohn's or it *isn't* Crohn's. And who knows, he or she might be wrong.

Uncertainty: not an easy thing to live with.

But...you get through it. Eventually you get a doctor working for you, treatment plan in place, lifestyle changes starting to feel more and more commonplace, your feet seem to be under you again, and life rolls on. A new normal. I hope for you, in whatever way your situation turns out, it's a good normal!

Hi vanilsa,

Welcome to the forum! I hope things are going well so far at your internship. I think that it's great that you are at your internship. As much as one can, you do have to try to carry on with your life as much as normal. It can be a balancing act in terms of taking care of your health and pushing yourself to do normal things and I don't think finding that balance is easy but if possible it is better if you can treat your disease without delay while living your life fully.

I agree that not much treatment necessarily happens quickly after surgery so in reality it may not make much difference if you delay until you get home - however treatment really ought to start quickly. If you want to go with the approach that gives you the best chance of a good longterm outcome then that's what you should do.

I am in the subset of Crohnie's who would probably be termed as having aggressive disease - for me that has meant that irreversible damage is done quickly and with little outward sign of the severity of the inflammation (or possibly even without severe inflammation my bowel scars and narrows). And because of that I do have to warn others that this is a real possibility. The stakes can be high. The margins for error can be small.

Of course the disease may not behave in a fast-acting or aggressive way for you but it is a risk you take when you don't treat the disease and the report you included says that you have signs of Crohn's in your remaining bowel - at the margin of resection - and you will possibly have inflammation elsewhere. Without more imaging you just can't know at this stage.

It would be better to treat the disease sooner rather than later. This would hopefully give you the best chance of making the most of this internship and all the opportunities that come after that.

If I were you, and if it's possible for you, I would start exclusive enteral nutrition - basically drinking complete nutrition drinks instead of eating normal food. Usually this is done for 6-8 weeks and studies show it has a 70-80% success rate for getting patients into remission. It is a treatment that promotes mucosal healing, which is associated with a good longterm prognosis.

There are newer studies that suggest that you can get the same results with 10% of your calories from normal food or even one that says 50% if your diet consists of these limited foods. Study is here.

Depending on your insurance, it's usually cheaper to get a prescription for Boost or Ensure or a similar supplement rather than purchasing OTC.

Thanks for your help guys.

My mother and I have been doing a copious amount of research on Crohn's, and, with help from my mom's background in personal training and vegan-ism, we've decided that I focus on refining my diet and exercise regime until I can get back home and see my usual doctors. I've been digesting nearly all foods just fine since my surgery recovery, but I'm more or less doing this to play it safe. I'm effectively cutting out all fried foods, seeded fruits, dairy, red meats, high-sugar foods, corn-based foods and fast food. I can't say that I'll be able to give up my daily beer or two yet, though Bread is tough for me to give up as well.

Do granulomas in themselves cause irreversable damage? And I'm still not able to grasp the meaning of the entire mucosal wall part.

Also, how should I go about getting a prescription for Boost or Ensure drinks? My budget is very small so I'd need a lot of assistance from my insurance. Would I be only drinking these drinks for 6-8 week span? Will it also help me gain my weight back?

I guess my main confusion is that I'm barely suffering from any symptoms - the most grief I'm getting is the soreness from my almost-healed JP Tube scar. I know this in itself is dangerous because it might cause me to be careless.

I know I have a lot of questions but the information you guys are giving me is really priceless. Thanks so much.

Hi,

I'm in the UK so I'm afraid I'm not much help with the details of US healthcare but certainly people do get supplement drinks prescribed by their GIs. Here in the UK, GPs will often prescribe supplement drinks for those needing to boost their calories so perhaps that's a route you could try too.

Yes, 6-8 weeks would usually be enough to get you in remission.

If you're interested in diet, or can't get enough Boost/Ensure, then do check out the links to the study above. http://mobile.journals.lww.com/ibdjo...icle=00007#P34 and the foods listed here http://mobile.journals.lww.com/ibdjo...00007.TT4.jpeg

Also here are some links to the IBD-AID diet too. Diet chart with phases also http://www.umassmed.edu/nutrition/ib...aid-reference/ http://www.umassmed.edu/nutrition/ibd/ibd-aid/

My recommendation would be to use a diet that has been shown to have some benefit for Crohn's rather than trying to reinvent the wheel. The diets don't work for everyone but knowing that they have worked for a good proportion of people on these studies makes them a good place to start.

Drinks like Ensure, etc. can be used in different ways - as a pure liquid diet, as extra supplements added to a normal diet to help weight gain, or to provide vitamins for people who can't tolerate much fruit and veg. I'm also in the UK so I don't know the cheapest way for you to get them.

You may not need to give up so many foods if they're not causing you symptoms.