My Story

Hi im a 40 yr old mum of 5 kids ive just joined this site this morning, i was diagnosed in 2001 when i was rushed into hospital with suspected appendicits an when they operated they found it was crohn's disease had spread onto my appendix from the bowel so i had a right helicolecotomy i think thats how u spell it sorry, i was in hospital for 10 days after my surgery i was put on pentasa but could not tolerate it so was put on infliximab infusions but reacted after the third infusion an was taken straight of it , so i was then put on mercaptopurine which i have been on 50 mg for about 4 yrs now i think sorry for not remembering everything at this ppresent moment but im really poorly again an have just had a colonoscopy done a week ago which was extremely painful for me at this present time due to the imflammation, i have suffered with diaorrhea since just before my operation in 2001 an have never had a normal bowel movement since i find this very embarrasing when u want to spend time with your friends or family socialising, if i eat out i have to be home within an hour of finishing the food.. well the results show im very poorly again an i have been given 2 options... 1) Operation or 2) new treatment Adalimumab i was asked if anyone in my family has had TB which i know there has been but to what extent i dont know enough so have asked my family for that info but would like to know what other people think, had alot of flare ups since my last op never had a full year where ive been great i miss quality of life with my family an friends an so in 2009 when i was poorly i told my last consultant i wanted a bag if they operated on me again as im missing out on so much of my childrens childhood an dont want to i did not need the op then as i left my ex partner it was stress makin my condition worse, i have moved to an area i have never been to before had to get a new consultant an now have this decision to deal with, i would really love to be able to go back into working but i know that is along way down the line for me at this present time in my life but im very positive just very tired and want to get well as quick as possible, Thank you too all who took the time to read my story an i look forward to reading other peoples on here as i think it can help to talk to others who suffer from this awful disease :ghug:

Hello and welcome to the forum, I am sorry to hear you are feeling so poorly again :hug: Definetly check out our treatment forum as there will be info here regarding both options you have been given - not an enviable decision to make for sure. Also have you ever tried a liquid only diet? Just thinking this may help with symptoms at least for you.

Hope you can be feeling better soon

AB
xx

Hi thanks for replying to me, i have actually been on liquid diet on an off since January but it still causes pain ive lost a stone an half since then but cant afford to lose anymore as im only 5' 1" an weight 6 half stone now so really want to find out aboout this new drug they have said i can start i have reacted to all my other medication apart from the 6 mp ive been on 75mg at first but was too strong for my body weight so ive now been on 50 mg for 4 years an it hasnt really helped me, hence why they have now said 2 option 1) operation or 2 Adalimumab but i like to read about these drugs before they try to make u take them as i dont want my problems to get worse or even get other side effects on top of what i already have. i am only managing 2 ensures a day feel so tired just want to sleep all the time now an when i have ensure i have to go to bed an sleep cos the pain is now unbearable it physically drains me, i dont know how to get about on the site i had to go through my email reply you sent as im not very clever with these things sorry .

Hi there, I assume the tests showed that you have a stricture? I am wondering if the narrowing is getting worse if you don't even find releif from being on liquids only. What has you doc said about this ongoing discomfort? Did they give you any additional meds to help bring down any inflammation that may be going on? With regards to the Humira click on this link and it will take you to the sub forum for it: http://www.crohnsforum.com/forumdisplay.php?f=59.

AB
xx

Hi my results from colonoscopy showed my colon looked good but they said the narrowing is fine they managed to get the scope through but itss right by my belly button i think its the ileum area im in so much pain there all the time but ive been very sensitive there since my operation in 2001, I just want to find some information about this new drug so i can hopefully come to a decision on which way to go as i am seriously considering askin for a bag as i did in 2009 as i was booked in for a another operation in 2010 but it was cancelled as i left my ex partner of 18 yrs as i was so stressed in the relationship an i quickly got better again, but ive been ill for the last 21 months an slowly deteriorating an just want to get well asap to enjoy this summer with my kids as i have 5 kids but only 4 at home but its very hard work as im so tired now i want to sleep all the time an then have to sleep when ive taken ensure so i dont see alot of my kids an dont spend any quality time with them as its to tiring for me i go back in 3 half weeks to consultant to tell him my decision so confused with it all so hence why i joined an wrote my story xx

Hi thanks for the link it was helpful xx

No worries. I think if the pain is bad enough it may be worth looking into getting the appt brought forward, I am wondering why the doc hasn't got you on a med to bring the inflammation down,......may be worth asking abut this.

im only on 6 mp 50mg an buscopan 15 mg i take 2 upto 4 times a day but nothinelse i was given a vitamin tablet to take a few weeks back but they haven't given me anymore xx

Greetings and a hearty welcome to you. I'm glad you've joined our little community

Angrybird has covered a lot already (isn't she wonderful?) so I only have a little to add:

1. Since you have chronic diarrhea you may want to look into psyllium husks and discuss that option with your consultant if you think they sound like a good idea. I know they've helped many people here cut down on how much they have to go.

2. Have you had your vitamin B12 and vitamin D levels tested? Many people with Crohn's Disease are deficient and if you are, proper supplementation can make a big difference.

Again, welcome to the community!

Thanks David i will have a good read of that today an if i think it will help i will mention to my consultant.

Smb71