Recently diagnosed

[Laineyp]

It's all happened very quickly starting with severe abdominal pain. An ultra sound, colonoscopy, MRI and numerous blood tests within 2 weeks and I have been diagnosed with Crohns.

The doctor believes I've had it for over 18 months due to past symptoms but it only got bad recently.

It's been a lot to take in and I have so much to learn on managing this.

I guess I'm on here to take in any advice on how others have managed things.

The medication seems to be working and I've changed my diet to include a lot more fruit and veg.

Any advice would be greatly appreciated!

 

[UnXmas]

It's good to hear you got your diagnosis relatively quickly. Catching things early is best. Have your doctors told you much about where your disease is located or how severe or mild it is? Fruit and vegetables can actually cause problems for many people with Crohn's, as fibre can be difficult to digest, so it might be an idea to reassess your diet if your symptoms worsen. Are there any symptoms you're particularly concerned about or any specific questions you'd like to ask?

 

[Laineyp]

So far we know the large bowel is covered in ulcers. I am awaiting results from the tests on my small bowel to see the severity of it. I have a follow up app on Thursday so hoping to have more answers then.

Reading other people stories can get somewhat confusing and I am beginning to realise what works for some doesn't work for others and what is a problem for some isn't a problem for others.

I increased my fruit and veg intake due to reading about your body not absorbing enough nutrients. How would you overcome this without adding more fruit and veg?

Is it worth seeing a nutritionist?

I am also concerned about weight gain from the steroids as it seems to be a common symptom of taking it. I'm not sure if the steroid is a permanent medication or just to get it under control. I'm on 3 different meds at the moment and don't seem to be getting any bad reactions to them. The pain I was having has gotten a lot less with most the pain coming at night time.

 

[UnXmas]

You may not have any problems absorbing nutrients, your doctors should be checking for deficiencies with regular blood tests. They can prescribe supplements if needed. Steroids are probably temporary, and not everyone gains weight while on them. They may increase your appetite, but if you can ignore the hunger and not increase your food intake, you won't gain weight. I've never found dieticians or nutritionists to be of any help, but as you've noticed, people differ in what works for them and many do find them to be useful.

 

[Laineyp]

I'm having weekly blood tests so I guess he is watching that. Lots of questions for him when I see him this week I think! Like I said it's all happened so fast and I'm just trying to get my head around it all: think it's going to take some time and adjustment! Thanks for your responses!

 

[Tuff]

Welcome to the forum. I'm glad you got a quick diagnosis. If you are losing a lot of weight, that would be an indication that you're not getting enough nutrients. I went to skin and bones, and my doctor didn't seem all that concerned.
I think stress management is helpful, stress always made my symptoms worse. Have your vitamin levels tested. Anemia is common with Crohn's. Check your meds, some should not be taken with alcohol. I think smoking, coffee and alcohol will make your symptoms worse, but not everyone reacts the same way. There's lots of reading on this site, but some of it is contradictory.

 

[MrHayven]

Was diagnosed for the first time around a month ago after having a 6 week flare up doctors say I was in bad shape. I lost 50 pounds and they have me taking steroids that seem to be working. I spent 14 days in the hospital with the worst kind of sick bloody stool horrible stomach pain and just in bad shape. Im home now trying to gain weight waiting for them to start me on biologics I think they called it,but feeling better. What a ride never been so sick ready to get back on my feet,eating pretty good now and think Im on my way.

 

[Laineyp]

I have lost a little bit of weight but nothing drastic.
I have a pretty high stress job which I am trying hard to not stress so much but easier said than done!
I'm not a smoker, coffee seems to still agree with me but I haven't felt much like drinking alcohol, guess time will tell on that when I start feeling much better. I've def found a lot of stuff contradicts each other but i guess everyone is different and reacts differently.

I am lucky I haven't had any hospital time, I can't imagine what you have gone through and the pain you must have been in to warrant hospital. Sounds like you are on your way to getting it under control.

I think the biggest learning curve is going to be learning how to managing it for the rest of our lives.

 

[Muppetgirl]

I increased my fruit and veg intake due to reading about your body not absorbing enough nutrients. How would you overcome this without adding more fruit and veg?

It's also worth remembering that when they say nutrients they mean everything required for balanced nutritional intake. This includes all the main foodstuffs; protein, carbs and fats, as well as the vitamins and minerals we've come to associate nutrition with in popular culture. I only say that to guide you, not because I think you necessarily need to worry about these things. I agree your docs should be on the look out for deficiencies and signs of malabsorption which can lead to malnutrition.

 

[Laineyp]

Thanks for the advice muppetgirl. I definitely have a lot of questions for my dr when I see him this week!

 

[24601]

Welcome to the forum!

The steroids are a short term medication used to reduce the inflammation and get you into remission (which should be defined not just by an absence of symptoms but also normal inflammatory markers in your blood, stool (fecal calprotectin) and normal imaging)

You would also normally be put on medication to maintain your remission.

Crohn's disease is characterized by periods of remission and relapse and without maintenance treatments most people relapse.

Maintenance meds are usually started before coming off the first line therapy (in your case steroids) as these medications take time to get to therapeutic levels.

Some people also need that additional medication to get into full remission.

As you've seen, disease behaviour varies widely and people respond to different treatments. It's important to monitor disease activity and drug levels to optimize your treatment.

Best of luck

 

[Laineyp]

I've been put on pred, pentasa and imuran. I've read so much negative stuff about the pred. I'm glad it should only be a short term med.