Newbie Update.

[SumCiA]

Hi everyone, hope your all coping well. Just returned from my consultation will the specialist and thought i'd post an update. The Prednisone i have been taking has given me 6 days of relief that i have not had in over 2 years now and for that i'd take any side effects it can throw at me, although luckily enough none so far.

Parents came with me this time, anyone would think i was 26 going on 13 but i am more than happy with it, anytinhg to give them some more peace of mind. Looks like my dilemma of having to choose between meds and surgery is out of my hands though. He said the severity of my crohns would be in the top 10% if there was a scale and that i had a large stricture in the ileum region and also a near complete blockage 4cm down in the small intestine. Surgery it is then. I must admit it is kind of a relief that i don't really have a choice in the matter and that its pretty much a required procedure. I really was in a dilemma about choosing whether to stick or twist. He also said that the hospital i am being treated in specialises in crohns and gets referals from the whole country (UK) so this gave me more confidence in the diagnosis.

I still have to have several surgery consults to come so no date set yet. I have been booked in for a Barium Follow Through on Tuesday. Any info on what to expect with that would be great.

Thanks everyone. As always........take care.

 

[Creepy Lurker]

Hi everyone, hope your all coping well. Just returned from my consultation will the specialist and thought i'd post an update. The Prednisone i have been taking has given me 6 days of relief that i have not had in over 2 years now and for that i'd take any side effects it can throw at me, although luckily enough none so far.

Parents came with me this time, anyone would think i was 26 going on 13 but i am more than happy with it, anytinhg to give them some more peace of mind. Looks like my dilemma of having to choose between meds and surgery is out of my hands though. He said the severity of my crohns would be in the top 10% if there was a scale and that i had a large stricture in the ileum region and also a near complete blockage 4cm down in the small intestine. Surgery it is then. I must admit it is kind of a relief that i don't really have a choice in the matter and that its pretty much a required procedure. I really was in a dilemma about choosing whether to stick or twist. He also said that the hospital i am being treated in specialises in crohns and gets referals from the whole country (UK) so this gave me more confidence in the diagnosis.

I still have to have several surgery consults to come so no date set yet. I have been booked in for a Barium Follow Through on Tuesday. Any info on what to expect with that would be great.

Thanks everyone. As always........take care.

I'm glad the steroids are helping. They really can be a miracle when you're desperate for some results.

Any option you would have had to postpone surgery would have been just to postpone it. When you get bad strictures like that, surgery is pretty much inevitable at some point.

Hope it all goes well!

 

[Keara07]

Hey Freddo - Sorry to hear about the surgery, but better to know then to wait ans see and really, nothing gets better anyway - best wishes.

For the barium follow through, had my first about 4 weeks ago - You get to drink a mixture (maybe 2 cups total) while they take pics on the X-ray (not so bad - the stuff is thick and a bit sweet actually but do-able - for me the fizzy crystals I had to take first were the worst - like concentrated carbonation or a bunch of pop rocks....it expands your tummy really fast and you have to burp, but you are not allowed to). Then, after that, you get to down another cup or two of the drink and sit for about an hour while everything moves on down, so to speak, and they take pics of the bowels. The pics don't hurt, for sure, but I did react halfway through the final drink with nausea and pain and daytime *night sweats* (but I was in a bad point of the flare back in January too)....

I was really ill for about 4 days after as well, but I reacted a bit to the barium, and afterwards found out it had sorbitol (sweetener) in it and for some reason I can't take that well - and it took a week for stuff to move through me completely due to the stricture etc issues I have - that said, I would do it again if it helped with the docs to be given any info.

I think the reaction was also due to the flare, as, like I said, I was just starting the predisone and that took over two weeks for the meds to start to work for me, so I didn't have any pain relief. I was stuck in the bathroom for two days as well moving the barium slowly, although it took a week for it to stop coming out too. Go figure...

I would take it anyday over the colonoscopy which I have eluded thus far (until they settle me down more.....).

Good luck and take care!

 

[SumCiA]

Thanks Creepy. Pretty much what i think really. A stricture is a stricture and its not going to suddenly reverse itself so i am pretty much happy to get rid of them and then fingers crossed they stay away for some time after the opp.

Hi Keara, thanks for the details of the Barium Follow Through. Sounds like you had a tough time with it. My sympathies. You are right through, we just have to grin and bare it when it comes to these test, they can only improve our chances of a better diagnosis/recovery. I drank some liquid for my CT scan, could that have been Barium? I too have managed to elude the colonoscopy for now, i think my strictures were so obvious from the CT they didn't feel the need to perform one straight away although i am expecting one prior to surgery. Looking forward to it.

Take care all.

 

[Keara07]

I had the CT done too - it's a different drink - And overall, the barium is better for sure. I thought the CT stuff tasted horrible - plus it gave me nausea they had to put in gravol or it all was coming back up - then again, I was in the ER for this recent flare for the first time when I had the CT.

The CT was 95% of my dx and the barium confirmed, but also showe the fistulas and stuff so again, like you said, good for information. So much for feeling like a dainty girl though when these tests are done LOL