Crohny66

[crohny66]

crohny66

Hello there. I am 35 years of age and was diagnosed with Crohns disease when I was 14. I was diagnosed after having my appendix removed. I suffered from a fistula after that which wasn't fun. I have had 3 resections and a couple of operations to divide adhesions. I have been medication free for a number of years. I think I have learnt to live with a lot of the symptoms, especially toilet habits going from C to D constantly. I suffer from pain the 2 weeks preceding a period. Relief came after having kids but steadily the pain gets worse with each month.

I thought I would join the forum to share my experience and to understand if the symptoms I get are normal. I look forward to chatting with other members.

crohny66

 

[glum chump]

Hi Crohny66:

Welcome to the forum! You've had quite a long journey with Crohn's and I'm glad you've been able to be medication free. Are you taking anything to relieve your symptoms during your period or are you living with the pain for the two weeks?

Looking forward to hearing about and learning from your experiences. The forum is rich with knowledge and experience---I'm sure you'll add to the richness.

Cheers

Kismet

 

[crohny66]

Hi Kismet,

Thanks for the welcome. I am not taking anything for the C or D. I try not to take anything for the pain until it becomes unbearable and then I take soluble (fast acting) panadol and add codeine if it the panadol doesn't take the edge off. I also use a heat pack. We are lucky enough to have a spa and it helps to sit in the spa and let the jets massage the lower back.

crohny66

 

[Dexky]

Welcome Crohny! Do you still have regular check-ups with a GI? I'm guessing you are sans meds by choice. What meds have you previously been on?

 

[crohny66]

Hi Mark,

I'm ashamed to say I have not had a check up in over a year. I was taken off the meds by my GI years ago (and in the UK, I'm now in Oz). The main meds have been Mesasal and of course the dreaded Pred!

I see you are the father of a crohn's sufferer. I take my hat off to you. Now that I am older with my own children I understand and sympathise with what my mum went through with me being so ill all the time. She did a brilliant job of being there for me as I am sure you are to EJ. How old is EJ?

 

[Dexky]

With your history of multiple surgeries, why did the GI take you off meds?

EJ will be 12 in Sept. Thank you!!

 

[crohny66]

I was in remission and I wanted to fall pregnant. After discussion it was decided it would be best to be med free. At that time I was taking Mesasal. That was over 7 years ago and I think there has been some changes in treatment. Reading through this forum there seems to be new drugs and surgery techniques (I'd never heard of a resection done laproscopically!).

 

[Dexky]

Haha, "fall" pregnant! That's how I'd put it too! How many times have you fallen?

If your symptoms worsen in relation to your periods, have you explored that correlation?

 

[Nico85]

You should never come off your meds, thats the first rule of being a Crohnie!
You wouldnt come off your heart pills if you had heart disease... same with the bowels

 

[jo88]

hi all, i had surgery 10 years ago, completely med free from then on, only b12 jabs every twelve weeks. i follow a low carb diet, drink mint tea and slippery elm. xx

 

[crohny66]

I think 10 years ago they did stop your meds if surgery put the disease in remission. Yes I have explored the correlation in the past and they suspect i have endometriosis too. They did not want to do a laproscopy to look as I have had a number of surgeries and resections and they were worrying about perforating the intestine. I have also had surgery to divide adhesions. I am trying to put up with the pain as long as pssible because more surgery is a quick fix but would make things worse in the long run. Hope that make sense?

I have only 'fallen' pregnant once and have 2 beautiful children.

 

[Dexky]

Endometriosis seems to be fairly common on here. I know two users, Keona and Astra, who have been dxed with it. Astra(Joan) had a hysterectomy due to hers. Keona is much younger and still struggling with it.

My wife fell 3 times.