Help me understand

[Niamh]

Hello everyone

I do not have Crohn's, but my best mate does. I am worried about her. I have joined this forum in the hope that I can mainly educate myself as to what is normal for a crohns sufferer and what is not.

She has recently been stuck on a liquid diet which meant that for xmas dinner she only had 2 cartons of what I call space shakes (it reminds me of what they eat in space)
She is finding this hard and has shut herself away from the world.

To try and support her I have voluntarily started a liquid diet myself (soup and liquidised solids) in the hope that she does not feel alone so much and to try and raise awareness amongst my community of the plight of crohn's suffers and the hardship that they face on a daily basis (for example last night I had a Christmas party to go to..lots of rich yummy food..that cause of my diet I couldnt eat..so I stuck it in the blender much to the shock horror of some of the guests..but they all showed understanding once I explained what I was doing it for, and pledged donations also )

I guess the main drive behind what I am doing is that a week before her diet actually started I caught her deliberately making herself sick after eating and drinking. I found this extremely alarming as over the last 6 weeks I have seen her body weight plummet from a healthy size 10 down to a frail size 6.. We rowed about her making herself sick and she said that it was because of her Crohn's that she was doing it. She is reluctant to take the drugs that she keeps getting given as they nearly killed her in the spring. (Cant say I blame her)

I am concerned that there maybe other issues behind her making herself be sick after eating, she says it was because she had drunk alcohol and eaten chips and that her digestive tract cannot handle it so she throws it up, to me all I can see is an eating disorder on it way ( I used to suffer with bulimia as a teen so I know the signs..rotten back teeth, bad skin, distorted views on self image, throwing up after having eaten etc), but because I don't know enough about her condition I cannot argue back. In my mind how is she ever gonna get better is she is making herself vomit.. I can appreciate that the drive behind her purging isnt that she thinks that she is fat, but I think it is a control issue..

I care very much for my mate and would like to hear your views on this situation, even if its just to put me in my place, I just wanna help her pull thru this x

 

[jlanier]

I will be honest, it sounds kind of concerning to me. I know that sometimes we dont like taking our meds because what they do to us, however, it is also extremely bad for us not to take them as well. I am also concerned about the vomiting. I know that when i eat something i shouldnt, i dont have to make myself sick. I think right now the biggest thing you can do is be there to support her. Not even necessarily going on a liquid diet like her. I know you are trying to be supportive. The fact that you are taking an interest in the disease, and learning is huge. I have a friend who just studied up on it, and that has made a world of difference. Not that he goes on a special diet. When we are on liquids it is normally because we are in pain, and fortunately if you dont have cd you dont totally understand the pain. So continue to be supportive of her, and study up on the disease. It's nice having people in our lives that we can talk to things about who at least know what we are talking about even you dont totally know how things feel.

 

[Grumbletum]

I agree with the above. She's very lucky to have someone who wants to understand and support as you do. When you say she's reluctant to take her meds, is she taking them at all? Some of the drugs are pretty scary, but so is untreated disease :-(
Do you know if she's making herself sick on a regular basis or do you think that was a one off? It must be very hard to be on the liquid diet, especially this time of year, and I think we all feel a bit rebellious about being on long term treatment at times.
I guess the best thing to do for the moment is to do what you are doing: keeping an eye on her and letting her know you are there for her. If the vomiting issues go on then I think there is cause for concern and you may need to persuade her to seek professional help.

 

[ekay03]

Hi Niamh, I can speak to this firsthand, because before I had pain control i did the same thing! I did it cause the pain was so bad that I would do ANYTHING to make it stop! I guess you could say I was bulimic for 10 years. I was not trying to loose weight! I was just trying not to be in pain, and for a long time it worked. Yes you are right. It has a lot to do with control. I am sorry i did it now, cause my teeth are awful, but still looking back, i wish I had found a doctor willing to treat my pain. I had to find a way to deal w/ the pain and since no MD believed i was in so much pain. I did what i felt i had to do. Crohns pain can be unbearable!
I would hate to see another person go through what i did. All I can suggest is that you try and find out if pain is behind your friends purging. If it is what is driving her, try and find her some relief. Doctors don't like to perscribe pain meds to people w/ crohns especially if you are young, but it is possible to find one. I dont want to come off as a "Pill pusher" but your friend is starting down a bad road.
One more thing before i close. You are a true friend to do all that you are doing.

 

[Niamh]

Firstly I would like to thank all of you for sharing your thoughts on this matter, I too have ended up feeling alone with this information and have felt like I have no one to talk to about it without talking about it behind her back to people that she knows ( which wont help cause she'll just feel talked about and judged).

Do you remember back in the day with Bob Geldof and Feed the World? Well I was only ten at the time and I felt so enraged at the famine in Africa that I done two 24hr famines to raise money for charity. What I am doing with the liquid diet is to raise money for the Nation Association for Crohns and Colitis charity, not just for my mate. I feel that if as a species (Humans) we can put man on the moon, build a space station, explore the deepest depths of our oceans why has there not been more done for these everyday illness's that plague so many people? Why is it that most people still are of the view that Crohn's is where the word Crony comes from, and have no real understanding of the illness?! Except that most sufferers are really slim and therefore it cant actually be that bad.. I am also guilty of thinking this at first.

I am aware that what I am doing is pretty extreme, but what you guys go thru everyday IS extreme! I am being really sensible and counting my calories and taking supplements... it's only for 6-8 weeks and I intend to wean myself back on to solids at the same time as my mate, I am in effect walking a mile in your guys shoes. Cause its the way I am, I dont know how else to be but ...Pro active

Its been really helpful to understand why she might of been purging, I believe at times she does this quite regularly cause she wants to be normal and fit it (eat and drink with the rest of us)..

I thought she was being just like the rest of us when we had drunk too much until I saw how she was doing it..but having suffered myself with bulimia I knew the instant I saw her purging that it wasn't the case. I didnt help the situation by flying off the handle and blaming myself for not noticing what was happening ( I do this ) but I also instantly knew that she needs me to be there for her and not judge... after all wtf do I know?!

So far its day two and I have raised £160 and made everyone that has seen me think a little bit deeper.

Thankfully she has just started taking some new meds this week! Also she is starting to see herself (painfully skinny) and be aware that this isnt good ( last week she thought that it was great being that skinny)

Thanks again for your pearls of wisdom.. and should I reach freak out stages again I shall return for some more of your pearls

 

[mickey]

Please keep an eye on her (as we know you will) and help her get support to end the purging. She needs help in making sure she is eating and drinking the right foods to avoid feeling ill. Putting good fuel in her tank will help get her healthy. There is hope!

 

[Niamh]

Please keep an eye on her (as we know you will) and help her get support to end the purging. She needs help in making sure she is eating and drinking the right foods to avoid feeling ill. Putting good fuel in her tank will help get her healthy. There is hope!

I agree.. I think that my friend needs to dare to be different and feel happy with that.. I hope that she will find her inner peace, after all, even us people without Crohns have our inner demons to silence x Thanks for the support it has made me feel so much less panic over the subject

 

[KayleighMeek]

Hello, firstly I want to say you have been amazing to your friend and to have someone so supportive around them must be a great for her.
Before I was diagnosed I was worried I was bulimic because I have always hated the way I looked and started being sick a lot( along wih a lot of other symptoms) . I thought it was all in my head then the dr's found I had crohn's.
If your friend is still struggling with the liquid diet maybe it's time to try a different approach I don't know what other meds she has tried but there are lots of options out there. I hope your friend finds some relief x

 

[David]

Greetings and welcome!

1. When I read about you going on a liquid diet as well, it brought tears to my eyes. You're amazing!

2. Your friend needs a therapist who understand Crohn's Disease. This may not be easy to find, but it's important. I say this because it sounds like your friend was traumatized by her treatment in the past. However, she needs proper treatment or she's going to be in serious trouble. If she's not taking meds because of that traumatic experience, then she needs psychological assistance.

3. Purging is bad in a healthy individual, in a Crohnie, it could be devastating for a variety of reasons. One is Crohnies are already at huge risk for vitamin and mineral deficiencies. Purging is going to assure deficiencies and the effects of those can and will be life altering.

4. Connect the eventual counselor to the doctor so they can work together to find a treatment plan your friend is comfortable with and educate her about why she needs that treatment plan.

I know this is a lot to throw your way but if you can handle a liquid diet, you can handle anything. You are amazing.

 

[behrooz66]

Hi,
The story itself is sad but I'm glad someone like you is involved in it.
By the way, you may wanna have a look at this

 

[Jessi]

Niamh, I love you already! :hug: Welcome to the family.

Your story brought tears to my eyes. What a fabulous friend you are. You are a friend to all of us for raising awareness of our diseases. Thank you so much for being who you are.

Our Administrators have created a new sub-forum for wonderful people like you to connect with other supporters. Check it out, if you'd like. It's small now, as you will see, but hopefully it will grow with awareness.