Mum of crohns

[lottie1963]

Hi I am new to this site my daughter is 20 yrs old and was diagnosed in march 2013 with crohns. Inflamation of the ileum and periannal disease crohns fissure. She has already had an op to assist the fissure to heal the gave botox injections and happy to say there has been some improvement here, but the pentasa hasnt improved her flare and she is now 3 wks into taking aza once a day tablet form but has now come down with a cold virus and rash on her face, been to docs today and they think she has a virus and just to rest. The problem with that is she works and is so fedup with feeling unwell is now starting to worry that she wont be able to continue to work, this is so unlike her .. I was just after some advice in how to support her at this time. She had such a full enjoyable life prior to this now she is constantly tired irritable, its soul destroying to watch her decline. The docs dont seem to have a clue sometimes I think I know more than them as I read up on the meds, diets etc.. sorry to go on think I just needed to get this off my chest.. I pray tomorrow will be a better day

 

[lizbeth]

Hello.

I'm so sorry that you have had to join us but I would like to give you a very warm welcome to the crohns forum. This is the place for info and suggestions but most of all support for you too. I have had some tremendous help since I joined last year and I'm sure you will too.

I have a daughter of 20 too who has chronic health issues (not bowel related) so I understand how you feel watching your daughter suffer. You are doing the right things already to help her by learning about everything and being there for her. Having support from my family has been very important for me, you being there for your daughter is invaluable. I'm still learning about this all myself so don't feel I can offer much advice but there will others along who can do that much better than I. I really just wanted to welcome you and to say please feel free to ask any questions, nothing is taboo and know that someone will be able to help. Good luck and I wish your daughter the very best hugs to you both. :ghug)

 

[Amy2]

My 16 year old was also diagnosed in March.

He's attending school half days and half online, due to lack of energy and some mild symptoms. He's in "remission" but he doesn't feel perfect. And I know things could get A LOT worse.

He's a sensitive boy, stress really bothers him, so we decided to set up a fund for him, so he never HAS to work. To do this, we began renting out the top 2 floors of our house to a couple of very nice grad students, which allows us to put away $1600 for him every month. He seems to really appreciate it and has less fear about what his life will be like.

 

[lottie1963]

Hi I would just like to thankyou for your replys. I often have gone on this forum when I have felt unsure of my daughters symptoms and have always felt better after reading other peoples experiences... my daughter now been put on iron tablets and medication for acid reflux of the stomach, its amazing how befor all this she was unable to swallow a tablet and now is a professional, that makes me sad but im also proud of her resilience to this disease.... she battles through each day going to work in the city travelling on the train going into meetings and all the time at some point of the day will be in some discomfort or pain. Prior to her diagnoses I hadnt heard of this condition, but since I realise its an unspoken ilness due to it being so personal.. forums like this help with its support and advice thankyou

 

[Justanothercp]

Lottie: your daughters age and presentation of symptoms sounds so similar to my onset, which has been over 25 years ago now! Is she taking anything other than aza for ileum symptoms? (She still on pentasa?)

 

[plantluvr]

lottie you are a wonderful mom! i understand how she feels about work. i had to start over many times. i finally filed disabilty, got it my first try. stress of the work world can be overwhelming. have you checked on any diets or foods that can trigger her? i keep a diary of what i eat,how many times a day i go,and how im feeling. it really helps. i just joined this forum recently, ive held everything in until then. shes lucky to have you! bless both of you.

 

[lottie1963]

Lottie: your daughters age and presentation of symptoms sounds so similar to my onset, which has been over 25 years ago now! Is she taking anything other than aza for ileum symptoms? (She still on pentasa?)

hi thank you for your reply, my daughter symptoms started 1 yr ago on her return from holiday she had a bad sicknes and upset tummy while she was away. She didnt tell me for 3 months all her symptoms I was worried and thought she might have glandula fever as she was so tired all the time. She eventually booked an appt a docs and when she came home she burst into tears and told me everything, she had been suffering stomach pains, mouth ulsers, night sweats, and broken sleep from having to go to the toilet in the middle of the night, she slso told me that she had been bleeding for some time... omg she had kepth this from me for more than 3 months, doc said she had a tear prescribed cream all this did was give hrr a horrendous headach, I insisted we both go back she had told him about the stomach pains but he didnt connect the two.....he said to me he was sure it wasnt serious she looked to healthy, I knew she wasnt well she had slways been able to eat, she had lost weight, she would eat and run to the toilet, she felt sick all the time, sometime she would almost look translucent like the life was just draining away. Long story short... her work had privat health and I requested with her she be referred and in feb she had appt with her specialist who promptly did a colonoscopy, mri and endoscopy, over a period of week by march she was on pentasa, and 2 mths ago had an operation to assist the crohns fissure which has been so painful none of the creams helped. She had botox and although the doctor didnt think it would fully cure it certainly does seem she is in less pain. She was then put on azathioprine, now iron tabletsas she is so anaemic... thats without mentioning the paim meds, stool softners and now acne cream for her face these spots have come from nowhere she hss never suffered before could it be the Pentasa..? Gosh i have gone on i needed to get that of my chest, she managed to go to work today and i know if she says she cant go in she is really feeling unwell as shes so determined that this wont beat her, her specialist said she has rose thorn ulcers the crohns affects her ileum. I worry every day how this is going to affect hrr life, im determined to help in anyway her progress and forums like this are wonderful in showing you to look forward no mattrr how bad today is. Thank you .