25, female, newly diagnosed

[bmelo]

So heres my story..
i was having massive lower abdomen pain for about two weeks before i decided i needed to go to the ER. At first they thought it was my appendix so they took a CT scan and realized i needed more testing because something was going on with my bowels.. so i then did a small bowel series. crohns it is!! so i stayed 5 days in the hospital with only IV fluids. the doctor put me on flagyl cipro and prednisone.

this was only about 2 1/2 wks ago and ive felt okay since. i have been on a low residue diet and have lost 10 lbs even on prednisone.. is this somewhat normal? i always here that people gain weight from pred. im on 40 mg a day and am supposed to be on it for another 3 wks. doc also says i cant work out and eat any of my favorite foods. i am a pretty big health nut and it seems like everything im supposed to eat is unhealthy. im wondering if once my flare up is undercontrol if ill ever be able to eat normally again?



any advice or insiration that this disease wont take over my life?

 

[Mayuko]

Hello! I'm 23 and I was diagnosed with Crohn's earlier this year at the end of February so I'm no expert, but I wanted to give my support! In the beginning I was suffering from moderate abdominal pains for a while but when I got checked with a CT scan the doctors couldn't find anything especially wrong so I just ignored it. Then one night I had terrible abdominal pains and couldn't stop vomitting for hours and so I went to the ER. I spent 6 days in the hospital, most of which on only an IV. After I was released I was still having trouble eating without having diarrhea so they did a colonoscopy and told me Crohn's.

I know I was also confused at first by the low residue diet I was recommended because normally healthy foods, like high-fiber foods, were considered bad. Plus, the list I got seemed like everything I usually eat was dangerous! I was also scared that I would never be able to eat normally again, but after my flare up ended I was slowly able to eat more and more foods. Now I'd say I'm in remission and I can eat pretty normally and not have to worry. Of course I'm not going out to McDonald's all the time, but since you said you normally eat healthy anyway you'll be okay in that respect.

I can't give advice about the prednisone because I was put on Pentasa, but I know I lost a lot of weight in the beginning because I didn't know what I could and couldn't eat and was basically scared of food for a while so I didn't eat as much as I should. But after my diet got less strict I got back to a normal weight.

Anyway, I'm glad to hear you are feeling okay at least and though I'm sorry I can't give good advice, I just wanted to say hi and give support!

 

[vanilla_chai]

Hi, welcome.

I'm a healthy eater too when I'm not sick. When I am sick my diet totally changes. I'm basically a vegetarian normally but get to where I can't tolerate veggies and end up eating a lot of chicken and noodles

I think prednisone makes you gain at least partly BC it increases your appetite. Are you hungry but having trouble finding food that sounds good? It might just take a bit longer too, its been a few years but I think it took me a few weeks to get healthy enough to start gaining. Long term you usually get puffy cheeks too which isn't weight gain but looks like it.

I just had surgery and I'm eating veggies again. I can't eat salad every day but once a week I eat a giant salad covered in veggies and beans - mmmm

 

[Thermo]

What is the plan for your long term medication after the steroids are done in a few weeks?

 

[EmilyElizabeth]

Bmelo I sympathize with your feeling that you have to go from eating healthy foods to (seemingly) less healthy ones. The year before I got diagnosed with Crohns I was on a health kick, I was eating so many salads, lots of raw veggies, lots of grains and nuts. Then it was like woah time to break out the white bread and chicken noodle soup. Haha it's weird at first but I gradually introduced some stuff back, and tried other stuff too to make up for it (just cook the veggies instead, etc)

 

[hope hope]

i fell better when i read ur post i know that there is hope in this life

 

[Ckt]

Mayuko..welcome to the forum and the crohns club! it is really one club I would have rather passed on but I am so grateful for the forum! I have always loved veggies and for the past 15 years ate pretty healthily. I,too, was a vegetarian prior to my diagnosis but I had to start eating meat again when I became very anemic and low protein levels so I began eating poultry and eggs again. I always know when I am anemic because I crave red meat!
When I have been on high dose steroids,I have gained tons of weight. Partially due to feeling so hungry and eating, changes in my diet,and water weight gain.
I haven't found a treatment yet that keeps me symtpoms free or even symptom toleration. But I am starting cimzia next week And hopefully I isill see some positive results.
I am also going to Chicago to an IBD clinic at the end of the month to seek a deco d opinion and lobby for an ostomy.which I never thought I would want but find my life is spent at home in the bathroom: I have tried to ignore my symptoms and go out anyways but end up in the bathroom wherever I go so I just stay at home now.
I am glad you are getting treatment and many find much relief. Sometimes it just takes playing around with the right combo of meds and lifestyle changes like diet.diet won't cure crohns but for me sometimes it will curb it to a degree where I can at least have a life.

 

[NikkiBaker]

Im the complete opposite to you guys and don't know if this will help . But I have the worst diet ever I have never eaten a veg or fruit ever... ( as a baby they made me sick!) so still don't eat them, the lack of veg etc is really unhealthy for my body but I have low level crohns symptoms (even when flaring- I only know I'm flaring now as the colonscopy showed it up) so don't know if it's my it or just my crohns. But I have crohns in the terminal illium and also partial blockage there.
So I'm always on a low residue diet due to my fears of being sick.
You are just going to have to play with your diet and find what you can tolerate. As everyone with crohns are soo different. I really hope that you find the right path for your health . ( I don't know if that helped at all) sorry

 

[vanilla_chai]

Good point on the cooked veggies. There are alls sorts of tricks to keeping veggies in your diet. Well cooked helps. When that no longer works I switch to baby food or just steam veggies then throw them in the food processor with some of the steaming water. I've spent at least one Thanksgiving eating turkey, mashed potatoes and a variety of baby food veggies . I also use a masticating juicer when veggies are giving me trouble.

I often am jealous of my husband who enjoys sitting around eating junk food

I know its difficult to adapt but I think the worst part is just getting figured out what works

 

[Amanda D]

So heres my story..
i was having massive lower abdomen pain for about two weeks before i decided i needed to go to the ER. At first they thought it was my appendix so they took a CT scan and realized i needed more testing because something was going on with my bowels.. so i then did a small bowel series. crohns it is!! so i stayed 5 days in the hospital with only IV fluids. the doctor put me on flagyl cipro and prednisone.

this was only about 2 1/2 wks ago and ive felt okay since. i have been on a low residue diet and have lost 10 lbs even on prednisone.. is this somewhat normal? i always here that people gain weight from pred. im on 40 mg a day and am supposed to be on it for another 3 wks. doc also says i cant work out and eat any of my favorite foods. i am a pretty big health nut and it seems like everything im supposed to eat is unhealthy. im wondering if once my flare up is undercontrol if ill ever be able to eat normally again?



any advice or insiration that this disease wont take over my life?

Hi bmelo,

Sorry to hear about all of your troubles. I too was recently diagnosed, in June, so I don't have all of this figured out. But what sounds very similar is my experience losing weight while on prednisone (imuran and humira). I have lost over 20 pounds since July. I too eat very healthy and have been lucky to have been able to eat anything since being diagnosed. I keep a food journal and write down everything I eat but it isn't very much. I'm rarely hungry and my stomach doesn't seem to be able to tolerate much food, I get a lot of pain if I eat too much. I am very weak right now so unfortunately I can't exercise like I normally do but I do a light arm lift and leg lunges to try and keep some muscles.

I hope this helps? or at least we can commiserate together?
Let me know how things go.
Amanda

 

[hope hope]

still waitting for medicine ?

 

[Nerple]

Welcome fellow Massachusettsite (What do we call ourselves besides Massholes?)!

I find it strange your doctor has limited you on exercise while on prednisone. My doctor has never mentioned it at all, and I've been on pred twice in the past 14-15 months or so. In fact working out was a major reason I was able to lose weight while on prednisone. I go back to the gym almost immediately after a flare-up. Simply because I always feel so weak after and want to rebuild the lost muscle from being laid up.

Though I should note, whenever I am having a flare-up and abdominal pain, I always lose a lot of weight. A minor flareup lasting 8 hours or so, can easily lead me to losing 4 pounds or so. (And I'm only about 140lb normally so 4 lbs ina day is big). The one time I was in the hospital for 5 days on IV only I lost about 15lbs just that week.

I'm also on a low-residue diet, and ehh, can't say anything all too hopeful. Though my doctor did tell me I can gradually reintroduce foods 1 at a time to see if they irritate me. Though outside of blueberries and peanut butter I really haven't tested it much. My diet now includes a lot of poultry. Mainly turkey and chicken.

Out of curiosity, which hospital were you in?

 

[bmelo]

hi masshole.. lol

i went to st lukes hospital.. where r u from?

 

[Nerple]

I'm out of Amesbury, but my GI is at Lahey Peabody.

 

[Tenacity]

Welcome to the forum

Just wanted to let you know, it would be a good idea to get onto some type of long term medication to keep the crohn's in check - BEFORE you wean down off the Prednisone.

Amanda D - for weight loss ask your doctor to write you a prescription for Peptamen 1.5, and have a home delivery service, like Apria Healthcare, deliver them to your door.

These drinks have been specially formulated for a GI impaired gut, so you will absorb the nutritients - and it is high in protein too. Each drink (8oz) has 375 calories. You don't even have to eat food while you are on them - treat them as a meal replacement drink.

Just make sure you drink enough of them to sustain your required daily calorie intake.

They don't taste very nice - order the vanilla flavor. Some people use these drinks exclusively to see them through a flare. Also look in the health section of the grocery store for some protein bars.

 

[Amanda D]

Welcome to the forum

Just wanted to let you know, it would be a good idea to get onto some type of long term medication to keep the crohn's in check - BEFORE you wean down off the Prednisone.

Amanda D - for weight loss ask your doctor to write you a prescription for Peptamen 1.5, and have a home delivery service, like Apria Healthcare, deliver them to your door.

These drinks have been specially formulated for a GI impaired gut, so you will absorb the nutritients - and it is high in protein too. Each drink (8oz) has 375 calories. You don't even have to eat food while you are on them - treat them as a meal replacement drink.

Just make sure you drink enough of them to sustain your required daily calorie intake.

They don't taste very nice - order the vanilla flavor. Some people use these drinks exclusively to see them through a flare. Also look in the health section of the grocery store for some protein bars.

Thank you so much for the tip!! Sounds delicious