Newly Diagnosed, Very Confused!

[BodieJaker]

Hello All!

I'm 21 and was diagnosed with IBD in April after a colonoscopy in December. Yay for the NHS taking forever with results. I've had digestive issues dismissed as IBS or piles for as long as I can remember but for the last 3 years or so its gotten drastically more painful with far more bleeding so I eventually started putting more pressure on my GP to refer me to the hospital last year. I'm awaiting MRI results currently to confirm this is Crohns rather than UC.

I was initially given a month of Asacol, which seemed to help, then Pentasa, which was horrible to take and I started bleeding again, so been back on Asacol for the last few months. Things seemed to be improving but for the last 10 days my I've been in possibly the worst pain yet and constantly bleeding and diarrhea.

My diet has been pretty terrible. I'm about 30 pounds overweight and for years I've been trying to eat more salad, more fruit, more veggies, more whole grain and now any of those things make me feel awful. I have no idea how to eat healthily and get the vitamins and minerals I need whilst not aggrivating the crohns, so because I'm feeling lost and because when I'm in pain I feel ravenously hungry (it's like my brain can't tell the difference between gnawing intestinal pain and hunger pains) I've been stuffing my face with carbs, carbs, carbs.

I've seen my GP today as my GI Doctor is on holiday, been given a blood test for aneamia/infection/kidney function and told to double my daily dose of Asacol from 2.4g to 4.8g for at least a week until this flare settles down. I've asked to be refered to a dietician, as my GI Doctor seemed to think diet was pretty irrelvant as long as you avoid triggers, but I think I'd like to try Elemental Nutrition to get this spiral undercontrol.

Finding this forum yesterday has cheered my up so much, I can't tell you. I spent hours reading and it helps to know other people feel lost, confused, are overweight, are hungry, have joint pain, have been through what I'm going through. My cousin has Crohns and she is underweight, sickly looking, was diagnosed in childhood, feels nauseous often so doesn't eat much, and I feel like my family are all looking at me, the fat girl who works full time, stuffs her face and moans she's tired and in pain but looks fine, and sort of don't believe there is anything wrong with me.

 

[woops!]

I am sorry that you are feeling bad, but glad that you found this site. I think that you have to do what feels right for you and if going to see a dietician would help then you should push for it. I don't know about many of the others on here, but I myself seem to live on carbs. If I could eat other food I would, but instant mash potatoes and cup a soup seem to be the only 2 foods that let me live in peace for a while. It also sounds like your Dr is trying to get you on the right meds that work for you. Please let us know how everything goes. Good luck.
Woops!

 

[valleysangel92]

Hello and welcome to the forum . Im sorry to hear that you are having such a rough time, you have come to the right place for help and support though.

Unfortunately a lot of people with IBD can be dismissed as having IBS as doctors dont tend to look into things with enough detail. Im glad you finally have a proper diagnosis now though and have started appropriate treatment. Its terrible that your test results took so long to come back. My MRI results took a couple of months but I had a copy of my colonoscopy report given to me the day I had my procedure. It did take a while for the results to get to my GP though.

There is a diet section to the website that you might find helpful while you try and figure out what you can safely eat. You could also find it useful to make a food diary detailing your meals and symptoms to make it easier to see any links between food consumption and symptom severity. You could then show this to a dietitian at a future appointment.

With regards to vitamins, it could be helpful to get your bloods checked to see if you have any deficiencies. If you are concerned about a lack of nutrients in your current diet you could take some basic vitamin supplements as long as you talk to your GP or GI first.

If things get any worse or dont get any better with the higher dose of medication and you are unable to see your GI, dont be afraid of going to the A&E if you feel the need to. Sometimes this speeds things up and you can begin a more helpful treatment regime and maybe get your test results a little sooner.

Unfortunately crohns/UC can be "invisible illnesses" sufferers can look perfectly healthy and seem as though there's nothing at all wrong when actually someone is really sick. I hope your family recognize this soon.

Im glad finding the forum has helped. Everyone is friendly here and all willing to help as much as they can. Feel free to ask every and any questions that you have. We're all here for you .

 

[723crossroads]

Hello All!

I'm 21 and was diagnosed with IBD in April after a colonoscopy in December. Yay for the NHS taking forever with results. I've had digestive issues dismissed as IBS or piles for as long as I can remember but for the last 3 years or so its gotten drastically more painful with far more bleeding so I eventually started putting more pressure on my GP to refer me to the hospital last year. I'm awaiting MRI results currently to confirm this is Crohns rather than UC.

I was initially given a month of Asacol, which seemed to help, then Pentasa, which was horrible to take and I started bleeding again, so been back on Asacol for the last few months. Things seemed to be improving but for the last 10 days my I've been in possibly the worst pain yet and constantly bleeding and diarrhea.

My diet has been pretty terrible. I'm about 30 pounds overweight and for years I've been trying to eat more salad, more fruit, more veggies, more whole grain and now any of those things make me feel awful. I have no idea how to eat healthily and get the vitamins and minerals I need whilst not aggrivating the crohns, so because I'm feeling lost and because when I'm in pain I feel ravenously hungry (it's like my brain can't tell the difference between gnawing intestinal pain and hunger pains) I've been stuffing my face with carbs, carbs, carbs.

I've seen my GP today as my GI Doctor is on holiday, been given a blood test for aneamia/infection/kidney function and told to double my daily dose of Asacol from 2.4g to 4.8g for at least a week until this flare settles down. I've asked to be refered to a dietician, as my GI Doctor seemed to think diet was pretty irrelvant as long as you avoid triggers, but I think I'd like to try Elemental Nutrition to get this spiral undercontrol.

Finding this forum yesterday has cheered my up so much, I can't tell you. I spent hours reading and it helps to know other people feel lost, confused, are overweight, are hungry, have joint pain, have been through what I'm going through. My cousin has Crohns and she is underweight, sickly looking, was diagnosed in childhood, feels nauseous often so doesn't eat much, and I feel like my family are all looking at me, the fat girl who works full time, stuffs her face and moans she's tired and in pain but looks fine, and sort of don't believe there is anything wrong with me.

I started a thread about that under Venting. Many crohnnies are overweight and have gone the same route as you. Salad just goes right through us and most veg. Supplements are the only way to get them sometimes. Or juicing is also a healthy alternative. I don't have a juicer, or I would. They are expensive. I really hope you totally search out this forum. It will help you so much! God Bless!:hug:

 

[DJW]

I've come to see how many great people there are on this sight. I used to eat lots of salad, veggies, and fresh fruit. Now they are a sure fire way to land me in the ER. best wishes.