Looks like crohns

[Jag23]

I went into hospital just over a month ago when I was in agony with pains in my appendix, I was due for surgery the next morning as doctors thought I had appendicitis, during the night my pains lessened and they sent me home after an xray. I was still getting mild pain in the same area so went to the doctors, I then got sent for an ultra sound as they thought I may have a cyst on my ovary. The ultra sound showed I had an enlarged spleen and inflammation of my appendix, so a day later they opened me up put a camera in and decided not to remove my appendix as "it looks like crohns" more tests....
CT scan "looks like crohns"
Colonoscopy "looks like crohns"
Next I need a MRI scan.

The symptoms I have are feeling tired, sometimes feel sick , mild stomach discomfort. I have a BM either 1 or 2 times a day. On the BM chart it's either a 4 or 5, I can't usually tell the difference.

I have changed my diet, basically a low fibre diet.

I've read many stories on this site and I guess I should be pleased as my symptoms don't compare with a lot of peoples but all I feel is scared.

I don't really have anyone I can talk to about this, I am a private person, although I have told people at work about my tests and what the doctors have said, I don't talk about how it makes me feel.

That's my story so far
I have many questions

Is there a possibility it could be something else?
What is a flare?
Do people usually just go on a diet when in a flare or all the time?

 

[KayleighMeek]

Have you been given a definite diagnosis yet? It seems to be a lot of tests and them saying it looks like crohns without giving you an answer. I was diagnosed through a colonoscopy and biopsies that were taken during.
A flare is when the disease is active and you will usually have symptoms such as stomach pain, increase in BMs, weight loss and the list can go on and vary for different people.
I have tried different diets to try and help but nothing makes much difference there are some foods I avoid as they cause discomfort. The main thing that has helped me has been medication it has helped me at times almost be normal again.

 

[Jag23]

I haven't been diagnosed yet.
3 different tests/different doctors have said it looks like it so I'm thinking that I do have it.

Up until a month ago I knew nothing about crohns and I felt okay, I had lost some weight (but I'd also stopped eating junk food), I did feel tired but I put it down to working and my stool was a little softer than usual but it's not something I would go to the doctors about.
When I started getting appendix pain I had no choice but to go to hospital.

To say this came as a shock is an understatement.

 

[UnXmas]

Hi, I know it is a shock to get a diagnosis like this. You will find life goes back and continues on again as normal, eventually. You may find that getting the diagnosis clarified actually makes you feel better - it removes much of the unknown and you can work on treatment. Don't be put off by reading horror stories - your Crohn's doesn't sound too severe at present, and many people go through periods of remission with no symptoms at all, or have a mild disease that allows them to live essentially normally.

There are no strict rules about diet. Some people swear by various alternative diets. I prefer to just be relaxed about it. I find a low fibre diet helps me, but I don't obsess over it. You'll have plenty of time to work out which foods suit you and try out various suggestions from doctors or forum members. No food is going to cause you to flare or make your inflammation significantly worse - foods may worsen your symptoms, but they won't do lasting damage. Many people choose only to watch their diet when flaring.

A flare is a period of active disease, as oppose to remission, where there is no active inflammation found on tests, and usually minimal symptoms. Sometimes remission is spontaneous, sometimes it's the results of meds or surgery.

Whether there's a possibility it's not Crohn's but something else is something your doctors will be able to tell you when they've finished testing. Tests can hard to interpret sometimes. The important thing is that you trust your doctors and believe they are doing everything necessary to help you. Even if you end up with a different diagnosis, or are undiagnosed for a while yet, you can still come to this forum for support or to ask any questions.

 

[Jag23]

I got told today that I do have crohns

I went to the hospital (out patients) to get discharged after my OP. I wasn't expecting any news or updates regarding this.

The Dr told me I have a narrowing of ileum.
I will find out more after my MRI scan and meeting with the specialist

 

[Crohnie1023]

Jag just wanted to tell u that not everyone with crohns is horribly sick. I have done quite well and have only had two major flares. I don't take any meds on a regular basis and have just learned to take very good care of myself. Nutrition and proper rest can do wonders. I may just be one of the lucky ones but I have done great. There is life after a crohns dx

 

[Jag23]

Thanks for all the feed back.
This weekend I have been having quite a lot of stomach pain, more frequently than before.

1) is this due to something I've eaten?
2) if yes, how long dose it usually take to get symptoms from something you've eaten?

 

[Crohnie1023]

When I was first sick, I couldn't eat any raw fruits or vegetables. It took a lot of perserverence and naseau to learn to tolerate them again. I now eat a very high fiber/ antioxidant diet but that's what works for me. Usually if my stomach troubles are due to something I have eaten it took until it passed the area of inflammation to feel better. If the pain continued, I assumed it was just inflammation and my bodies nudge to rest.

 

[UnXmas]

Thanks for all the feed back.
This weekend I have been having quite a lot of stomach pain, more frequently than before.

1) is this due to something I've eaten?
2) if yes, how long dose it usually take to get symptoms from something you've eaten?

It's not necessarily due to anything you've eaten. Chances are you'd have pain whatever you ate. Some foods can worsen symptoms, but there are usually many other factors influencing also influencing your pain.

Working out whether or not some food is causing your pain can be quite complicated. You can try eliminating various foods and then testing them to see if they provoke symptoms (though this can be confusing; if you do think a food causes a reaction, you'll probably have to test the food a few more times to make certain the reaction wasn't a coincidence).

Sometimes a food can cause a reaction straightaway, sometimes it takes a few days. Sometimes it's not one particular food that is the problem, but your overall diet. For example, I can eat a high fibre food - a piece of fruit, say - and have no problems. But if I eat several high fibre foods every day, soon I'll start feeling worse.

Honestly, my advice at this stage would be to concentrate on getting started on a treatment plan. Do you know what your doctors intend to treat you with? It may be that once you're on medication you feel a lot better.

If a food is very obviously causing you pain - if you get a severe reaction every time you eat it - then clearly it's best avoided. But otherwise, I would think the best thing is probably to stick to a fairly bland, low fibre diet until you've had time to get used to the diagnosis. Maybe spend some time reading about the different diets that people with Crohn's have had success with. There are a lot of good threads in the diet forum. But remember that no diet works for everyone with Crohn's - anything you try will be an experiment. Don't worry if you mess up and eat something that makes you ill - it takes time to learn what foods suit you and what don't, but you'll pick this up by trial and error. But you will find what works best for you eventually - which may even be that diet doesn't influence your pain much at all.

 

[Jag23]

I rang the gastro team and told them about the stomach aches and they along with my doctor they put me on prednisone (8 tablets a day for a week, then 6, 4,3,2,1). Also a calcium tablets twice a day.

Hopefully this helps.

Just wanted to say I appreciate everyone's comments on here.