New Crohns Diagnosis

[Lollipop]

Just joined up to this, I am writing this from my bed with cramps. Wanted to go out tonight but not sure my tummy will allow that. Any kind of advice in general or reassurance or anything would be nice, feel awful.

Anyway, I have recently found out I have crohns. I also suffer from anorexia and anxiety issues and spent nearly half this year as an impatient at an eating disorders unit (i am aware that crohns can be misdiagnosed as anorexia but in my case I have had it for 10 or so years already). I had to stop uni in my final year in March but I am back and struggling with adjusting to this new diagnosis as well. I am too scared to start the steroids my consultant gave me because of my intense fear of gaining weight from them. He has prescribed 6 weeks of budesonide (9mg for 2 weeks, 6mg for 2 and 3mg for the final weeks). I have seen him and my gp since getting them and they are trying to reassure me that I won't get side affects but I'm terrified. Everything is too much for me.

 

[my little penguin]

Do you have a therapist ?? That can help you talk through your fears
Fwiw Ds has been on steroids many times
Oral prednisone which tends to have more side effects
Budenoside only affects the gut so not the whole system like prednisone which is what everyone thinks of woth steriods

Ds has not gained weight any time on steroids -oral prednisone

For those that do gain "weight" it's actually just extra water the body stores up and goes away when your healither and off Steriods
Please talk to your therapist about your concerns

You can also ask your doctor about een (exclusive enteral nutrition)
Formula only -no solid food to induce remission
It's as effective as steriods.
No side effects
A nutritionist would tell you how much to consume for your healthy body weight

Ds has done this many times as well

Good luck and lots of hugs

 

[Sophabulous]

I can only agree with what my little penguin says. I did gain a little weight with steroids but I lost it again within a month, although I appreciate that for you it's going to be a much bigger issue.

I have also done the liquid diet and in my case it was actually more effective than steroids. I had no side effects, no weight gain and no issues with it whatsoever. In fact I was until recently doing 50% liquid and 50% solid food. I just don't know whether your doctors would consent to this given your other condition.

Unfortunately there's downsides to everything but the most important thing is that you are comfortable and happy that your doctors are taking everything into account. Sounds like you're really going through the wringer so big hugs.

Hope you get your night out tonight and come back and let us know how you get on x

 

[EmmaLou]

Hi Sending you support from Nottingham.

I was on pred for four months with rounds of IV hydrocortisone thrown in, and have been on Budesonide for four weeks. I had been losing weight because of un-diagnosed Crohn's and this stabilised whilst on the steroids. My weight has been steady since the summer. There have been odd fluctuations but these have correlated with periods of increased/decreased activity and appetite because of Crohn's symptoms and I wouldn't put them down to the steroids.

I hope the medication helps you.

 

[ronroush7]

Do you have a therapist ?? That can help you talk through your fears
Fwiw Ds has been on steroids many times
Oral prednisone which tends to have more side effects
Budenoside only affects the gut so not the whole system like prednisone which is what everyone thinks of woth steriods

Ds has not gained weight any time on steroids -oral prednisone

For those that do gain "weight" it's actually just extra water the body stores up and goes away when your healither and off Steriods
Please talk to your therapist about your concerns

You can also ask your doctor about een (exclusive enteral nutrition)
Formula only -no solid food to induce remission
It's as effective as steriods.
No side effects
A nutritionist would tell you how much to consume for your healthy body weight

Ds has done this many times as well

Good luck and lots of hugs

I agree

 

[Lollipop]

Do you have a therapist ?? That can help you talk through your fears
Fwiw Ds has been on steroids many times
Oral prednisone which tends to have more side effects
Budenoside only affects the gut so not the whole system like prednisone which is what everyone thinks of woth steriods

Ds has not gained weight any time on steroids -oral prednisone

For those that do gain "weight" it's actually just extra water the body stores up and goes away when your healither and off Steriods
Please talk to your therapist about your concerns

You can also ask your doctor about een (exclusive enteral nutrition)
Formula only -no solid food to induce remission
It's as effective as steriods.
No side effects
A nutritionist would tell you how much to consume for your healthy body weight

Ds has done this many times as well

Good luck and lots of hugs

I really appreciate your reply. I don't currently have a therapist, although I should but where I was treated for anorexia they just had me in there, forced me to eat (and put on weight which while having an undiagnosed crohns takes a stupid amount of calories) I had only 6 therapy sessions and when I was discharged I felt like I had no support.

Your reassurance is very helpful about the budesonide, thank you! I might try to start on them soon. Got an appointment with my consultant next week too, bit scared because he bought it forward almost a month after I had mri scans and an xray.

That een thing sounds something I would be interested in trying, thanks for letting me know about these things, I'm so new to all of this and don't know anyone else in real life with it.

 

[Lollipop]

I can only agree with what my little penguin says. I did gain a little weight with steroids but I lost it again within a month, although I appreciate that for you it's going to be a much bigger issue.

I have also done the liquid diet and in my case it was actually more effective than steroids. I had no side effects, no weight gain and no issues with it whatsoever. In fact I was until recently doing 50% liquid and 50% solid food. I just don't know whether your doctors would consent to this given your other condition.

Unfortunately there's downsides to everything but the most important thing is that you are comfortable and happy that your doctors are taking everything into account. Sounds like you're really going through the wringer so big hugs.

Hope you get your night out tonight and come back and let us know how you get on x

Thank you for your reply, it means a lot to hear from others with IBD. I did go out in the end! Took some paracetamol and lots of drinks and danced, recovering now but I needed that night out, it's been a long time. Such a good night though, got in after 2 night buses home and had a cup of tea

 

[Lollipop]

I can only agree with what my little penguin says. I did gain a little weight with steroids but I lost it again within a month, although I appreciate that for you it's going to be a much bigger issue.

I have also done the liquid diet and in my case it was actually more effective than steroids. I had no side effects, no weight gain and no issues with it whatsoever. In fact I was until recently doing 50% liquid and 50% solid food. I just don't know whether your doctors would consent to this given your other condition.

Unfortunately there's downsides to everything but the most important thing is that you are comfortable and happy that your doctors are taking everything into account. Sounds like you're really going through the wringer so big hugs.

Hope you get your night out tonight and come back and let us know how you get on x

Thank you for your reply, it means a lot to hear from others with IBD. I did go out in the end! Took some paracetamol and lots of drinks and danced, recovering now but I needed that night out, it's been a long time. Such a good night though, got in after 2 night buses home and had a cup of tea

 

[Sophabulous]

Thank you for your reply, it means a lot to hear from others with IBD. I did go out in the end! Took some paracetamol and lots of drinks and danced, recovering now but I needed that night out, it's been a long time. Such a good night though, got in after 2 night buses home and had a cup of tea

Sounds awesome, it can be the best thing for you when you're feeling rubbish! Take care x

 

[Lollipop]

Hi Sending you support from Nottingham.

I was on pred for four months with rounds of IV hydrocortisone thrown in, and have been on Budesonide for four weeks. I had been losing weight because of un-diagnosed Crohn's and this stabilised whilst on the steroids. My weight has been steady since the summer. There have been odd fluctuations but these have correlated with periods of increased/decreased activity and appetite because of Crohn's symptoms and I wouldn't put them down to the steroids.

I hope the medication helps you.

Thank you! I'm only down in London so not far. Thanks for the reassurance with the budesonide