Update and changed meds

[Jenny06xx]

I still haven't been well since last Monday and eventually spoke to my gi secretary on fri told to up steroids ( budesonide ) and start pentasa.

Still bad all weekend etc
Held of from gp till today when enough was enough
sat at home crying in pain and exhausted was
getting me nowhere !

Saw gp this morning and told to up pentasa to 2 sachets a day (2g)
Taken off trammadol and codeine and given dihydrocodeine 60mg slow release 2x a day
Dihydrocodeine 30mg quick release 4x a day

So hopefully this change in meds will do the trick till I see my gi on the 1st aug which was the new rushed app given from his secretary I forgot to mention
Food is a no no an my mouth is agony as well as gums !
My head is banging an feels as if it's gonna explode with a high temperature
This is not the route I was hopeing to take but looks like surgery is on the cards coz I'm struggling so much .
Thanx all for all your help an advise here
Jen XX

 

[Ian]

So sorry to hear you're suffering Jenny, I know only recently you were starting to feel quite well!

Have you ever been put on an immunosuppressant (Azathiuprine/6MP) or a biologic (Infliximab/Humira)? If not then there are a number of drug combinations your GI could try for you before you have to resort to surgery. What kind of surgery would you need anyway? Where is your disease located?

 

[Jenny06xx]

Hiya Ian thanks for your reply

I was supposed to start aza last year but then my gi changed his mind and left me on zero meds just vitamins an painkillers so I could have my pill cam to see my small intestine .
I've got crohns of the small and large intestine mainly the small intestine and ileum .
I have a stricture ( maybe more but the pill cam got stuck there ,so only 2hrs has been seen but did eventually come out on it's own as I've had X-rays lol) in the small intestine which has only been left to c how I cope on
budesonide .
An I was great so we left it , then the last couple of wks I've gone downhill again so there may not b an option but surgery which at the time was a resection but now who knows !
Were not sure how bad my intestines are until they get in there an see , an from the way I feel I doubt it will b good but u never know !
So best outcome is the resection which I'd actually b glad of right now tbh .

 

[mallenfaye]

Hi Jenny!

Hope your feeling a little better today?!

When I was admitted to hospital in February and first diagnosed with Crohns disease in my ileum I was put on the Budesonide at 9mg per day (3 tablets). To start with it made me feel great and like I wasnt even ill. As I started to taper the steroid down to 6mg all my problems came back so up I went to 9mg again. This continued for weeks/months of tapering and back up. Eventually my lovely GI decided that my body didnt want the budesonide anymore and he put me on to Prednisolone at 40mg per day. All went well again and I started feeling better. Now I am down to just 10mg per day and have started Azathioprine 100mg per day (for the last 5 weeks) and I have to admit I feel good. Back to see my GI a week today so hoping he stops the Pred and I just continue with Aza. Dont get me wrong I still have bad days where I feel unwell and very nauseated but I am definitely better than I was.

I can totally sympathise with you though as when I was up and down on the Budesonide I was really ill, hot and cold sweats, constant pain and the dreaded D, feeling and being sick, exhausted all the time etc etc. The list is endless isnt it?

All I can say is that my GI was reluctant to get me on the Aza to quickly but now that he has we are both happy. I have had my first set of bloods back too and it doesnt seem to be causing me any other issues, apparently it can upset your liver and kidneys and your blood counts.

Speak to your docs/consultants/nurses and see if there is other medications you can try. I personally hope to never have to have surgery and if i can keep this dreaded disease at bay with medication then that will keep me smiling!

Take care

Faye x

 

[lacey2]

Wow! The stories are very strong and extremely sad! Hope the doctors start listening and try to go outside the box to provide relief where ever and whenever possible. Pain in a lower right side, I though 42 yrs, but, recalling, it has actually been approx 60 yrs +. Finally, GI I have been seeing for 7 yrs, has me on a string of medication that helped. Then, an emergency sigmoid colon removal due to vaginal fistula, cause of the removal. Thought my problems over. In hsp 10 days, pain in lr side worse than before! Recovery making bowel adjustments, one yr later still at it. Pain slightly reduced, off the meds, the major set back with WBC at 20+. Two weeks later, better, 14+. One month later, pain getting better, back on all the meds, but, feeling cross with gi, as he put me on a 6monthly visit list, ignoring all responses to help! Pain specialist adjusting medications with gp, and now just waiting to see gi. I understand there is hope out there, but, feels great to sound off, and know I'm not alone. If they can put a man on the moon, surely they can come up with answers to crohns and colitis!

 

[ronroush7]

I wish you the best.

 

[hcrum87hc]

It sounds like your GI hasn't really tried out any of the better/stronger maintenance meds. I know if you have a fibrotic/scar tissue stricture the meds won't help. i just had a resection myself, and it was the best thing I could have done. Unfortunately, it was due to several fibrotic strictures that had become very narrowed. You shouldn't need steady pain meds if you're on some good maintenance meds that can keep your inflammation under control. Have you had an MRE to determine the make up of the stricture? If it's mostly made up of inflammation, you'd probably be better off in the long run trying out some of the immunosuppressants or biologics before having surgery.

 

[lacey2]

My GI made several request to Federal Government for use of Humira, declined on each ocassion as Crohn's was not diagnoised.

Made an officaial complaint and application to governmen:thumleft:t authority to see if they can reverse their decision.