Mum of crohns sufferer

[ali]

Hi i am a new member i have been looking in at your posts recently and thought i would join as a mother of a crohns sufferer ,i find this site really helpful to know my daughter is not alone ,her crohns started when she was 17 (now 23) she has been in and out of hospital and hadc countless drugs !! she had part of her small intestine removed about 4 years ago and wasnt too bad until this year when it started again ,i worry constantly the worry never goes away . At the momnent she is on prednisolone steroids but just waiting to see if she is to start on inflixihib ,bowel surgery has been mentioned again but the crohns is now in lower bowel aswell as small intestine so if she has surgery and bowel removed she will still need drugs
its great to be able to speak to other people in the same situation any other worried mums out there
thankyou x
i

 

[Crohn's 35]

Hi Ali, and welcome to the forum, I am so sorry you are having to deal with your sick daughter. I know as a mom (my daughter is 22 soon) and I am the one who is sick and I couldnt even imagine as a mom having to worry. I have had surgery and it lasted alot longer, but I think it is too soon for her to go through that so soon after another. Remicade, Humira or Cimzia are the biologics and Remicade is by far superior from the forums opinions. Since this disease isnt curable, surgery is a last resort, and it can come back. Keeping her diet in balance for a Crohnie is best, no dairy, wheat, fats or alot of sugar or processed foods. There are lots of people here to help you with their experiences, good place to come where doctors dont always know how the disease feels. There are others here with spouses and children with the disease, feel free to ask any questions, maybe we can help ease your mind and your daughter's pain. Hugs.

 

[forum contributor]

:welcome: Ali!

Sorry to hear about your daughter. It's great that she has a mom who cares about her like you do!

 

[shazamataz]

Welcome Ali, Good to see you here! perhaps your daughter would like to join too - she would be most welcome

 

[Jennjenn]

Welcome

 

[jed]

welcome Ali,

glad you found us hopefully you'll find plenty of advice here to help with your worries

 

[Tan]

Welcome Ali,
I to am a new member but so far the information and support I have received from this community has been wonderful.
Im glad to see you are taking a proactive role in your daughters health by trying to find out as much information as possible about what she is going thru. It is a nasty disease and one that I still fully don't understand, so far I have realised that treatment feels like you are experimenting with trial and error and just hoping for the best outcome. Im also on Pred steroids went off them last week after 8 weeks but sadly my flare must not have been under control so I was put back on them yesterday, I also take 100mg of Imuran which is one of the drugs they use for maintaining the disease, however from what I have read Remicade seems to have very good results for heaps of suffers. Have they tried any of these drugs on your daughter as well as the steriods or are they saying surgery is her only option? Also did they put her on any of these drugs after her last surgery?
Good luck and I hope your daughter gets better soon hopefully without resorting to surgery!

 

[ali]

Oh thankyou to everybody who has replied its a wonderful site iam trying to convince Laura to join she would definitely find it benefical,she seems to go into denial about it all as for medication she has taken azithioprane but her white blood cells went too low she has just changed consultants now under addenbrooks at cambridge and is about to be re-introduced to azathioprane but monitered very carefully ,if this fails then inflixihib has been mentioned ,she has recently come off methotrexate
once again thankyou so much for your support my other daughter has recently started uni and her illnesses seem to be self inflicted !!!!!

 

[beth]

Hi Ali, and welcome!

Who are you seeing, Dr Stephen Middleton? - he's really good. I've been seeing him privately but am in the process of being referred back to him under the NHS as I've been through all other drugs and are going to try the biologics - adalimumab or Infliximab.

 

[Rhonda]

Welcome Ali! You'll find great people and lots of support here!

 

[Jer's Girl]

Welcome Ali! I know how much my parents worry about me. Sometimes i think it is (almost) harder on them. Thanks for supporting your daughter. You will find a lot of support here.

 

[Guest]

hi Ali and welcome there's some great advice on this thread already, particularly regarding diet - that's so important, and when it's ourselves who are poorly, sometimes we just can't focus on buying and cooking the right things for our condition. it helps sooo much to have someone else take care of this for us, especially when we're flaring.

i know how hard it is for a parent to see a child suffering, and i know that feeling of helplessness... my own daughter has been through various illnesses, including acute appendicitis (needing emergency surgery) and suspected meningitis... and i remember the look on my own parents' faces when i was seriously ill with Crohn's in hospital. so we do understand.

being there for her, as you so obviously are, and understanding, are the two most important things you can do as a Mum - she's very lucky to have a Mum like you please encourage her to join.. i'm sure she'd benefit from being here.