Update

[cthomas]

Hi
I have not posted here for a while. Following a recent flare up I went to the doctor. I have had vomiting and stomach pains after each meal they gave me Prednisolone 40mg and Omeprazole 40mg on top of my Asacol 400g x 6 per day. They have said they want me to see a surgeon to remove the effect ilieum but my specilist has said they will not do this until a complete blockage is apparent. Has anyone had to go thru this I would prefer to have the surgery before things get to bad like they have before. I have previously had a blockage and been taken to er on about 5 occasions but they did the crohns had not been diagnosed so they left it to clear???Im worried this is going to happen again. Hope you are all well this disease really sucks at times xxxx

 

[Trysha]

Hello cthomas
sorry to hear you are going through some problems and hope they will soon be resolved for you.
it is good that they don't jump into surgery too quickly since can bring its own set of symptoms and complications.
My situation is a bit similar to yours but I still have to undergo more tests and do hope that surgery will be averted.Omeprazole is a great help for the gastric symptoms.
Good luck with everything
annsplash

 

[Crohn's 35]

Hi CT, wow, that is surprising that they will wait for a full blockage when you have been fully diagnosed? That to me doesn't make sense. For one a full blockage is extremely painful and emergency surgeries do not heal as good as been in the hospital with IV of antibiotics before and after. Trust me I know, had 2 resections. I would push your doctor to see the surgeon, you have that right. Have you had a full bowel obstruction? Sorry to scare you but natural child labour was a piece of cake in comparison, I didnt even wince when I had my daughter. A full bowel obstruction is my biggest fear, right next to having an MRI.

The other reason is, the Crohns could spread making them having to take out more than necessary down the road. Fight for yourself, I wished back when I was first Dx there was computers and a knowledgable person who has been there... keep us updated ok. Dont let this go.

 

[Keona]

Jettalady...seriously you fear MRI's that much? The worst part is the 4 large cups of crap you have to drink...and the shot they give you - only b/c it makes your eyes really blurry for a long time after. Are you claustrophobic..is that why?

Cthomas... I share your worry! I agree with Jettalady in that they're not proactive as opposed to reactive. Hope you find relief soon.

 

[Crohn's 35]

Yes Keona, I am majorily claustrophobic and I have informed all my docs that I am and must be put out completely..so far no MRI"S. NO one can talk me into it... CT scan, anytime.

 

[cthomas]

Hi
Thanks for all the replys. I have been advised that they think I have had a full blockage previously on a number of occasions however at that point the crohns had not been diagnosed so i was rished to hospital to sit in a waiting room etc etc. when these have happended I have vomited, fainted so my mum has had to hold me on the toilet i'm not really with it when it happens just know its the worst pain I could imagine, passed lots of blood to which the hospital did not seem worried about after witnessing these episodes have lasted up to 8 hours. I cant blame the docsa like i say they didnt know it was crohns just scarey now i know that i was left for it to sort itself out. I have asked for the surgery they have said keep taking meds until a blockage occurs again personally I dont want that i'm living my life in fear of that pain happening again I havent had a bad episode like this for about 6 months so now it has flared up with the vomiting on a regukar basis i would prefer just to get it done. My gp has referred me to the hospital again in view of having the op I just hope they sort it out before its really urgent again. xx

 

[Manzyb]

I totally understand how frustrating it is to be sick all of the time. The only thing with having surgery is that it usually seems to come back, just in a different place. That leads to more surgeries, and more possible complications and all of that.

Hopefully they will be able to treat it with meds instead of surgery. What meds do they have you on now?

 

[Manzyb]

Jettlady- I could understand how they would freak you out! I'm not claustrophobic at all and I was feeling really weird when I had my MRI last week! I made sure I closed my eyes b/c if I opened them I panicked a little.

 

[Keona]

Hey Jettalady,

I also understand. What helped me though was that they had me lay on my stomach. If I was on my back, I wouldnt have been able to do it. I visualized that I was in my bed facing the wall. I also did what Manzyb did and closed my eyes. The needle they give you that makes your eyes blurry does make you dopey as well so that helped. I dont think they can knock you out completely as they ask you to hold your breath at certain points.
I guess its CT scans for you huh ?...lol...

 

[Dexky]

Hey CT, when's your appt.?, keep us posted.

Jet, EJ had an MRI for his liver, the docs didn't think he'd be able to handle it. EJ said it was fun.

 

[Crohn's 35]

Sorry for the hijack cthomas.... I guess I am lucky tho, my docs have never suggested a MRI. Seeing as my Crohns is found by CT scans and colonoscopies and dx for 18 years, I am grateful I dont have to! A few of my friends went recently and I was feeling ill just knowing that. I am chicken, not afraid to admit that.

 

[cthomas]

hi
thanks for replys still waiting for another apt i currently have one for august but they want me to see the surgeon sooner. i am currently on asacol x 6, 40mg pred and omeprazole x 1 per day

 

[cthomas]

Another Update

Hi
Received my apt to go to see the surgeon it on Thursday so we'll see how that goes. Just wondered if anyone else has stopped taking medication and been ok. I occasionally forget my meds for a couple of days and feel fine this time I have not taken for 10 days and have felt better than i have for a long time no stomach aches no needng to run to the loo etc. Then last night I eat pasta with chicken and bacon and garlic bread i do no that sometime bacon does set me off but i have heard that garlic is another thing which causes people problems has anyone else got this?
Will let you all now haw thursday goes. Can anyone advise on the meds as i dont know wether to take or not am i just causing things to build up? xx

 

[Manzyb]

Hey there!

A couple of years ago I stopped taking my Humira. I was feeling okay and thought "why take any medicine if I don't need to?". I did great for about 2 months and then I started to get a little sick and then all of a sudden I dropped about 30 pounds that next month and was so sick that it sent me to the hospital with almost getting 3 1/2 feet of small intestine removed.

I know the feeling of not wanting to take medicine and the thought of having to be on it forever. Honestly though, its not worth going off of it. I never want to feel like that again. I don't really feel that great even on my meds, but I know what the alternative will end up being for me if I stop.

That's just my take on it and my experience! It's really all up to you and what you feel like you need to do.

I hope everything goes well for you!

Amanda

 

[cthomas]

Thanks.....think I might start to take again tomorrow after hearing that I kinda of thought that might be the case. I have my appointment on Thursday so see what happens. I normally get really bad symptoms if i stop taking then start again seems like i get more problems on the meds????

 

[Zalanicht]

The thing is if the meds work sure ok it will heal fine but it will heal smaller. I took prednisone and it healed well but some spots were down to 1mm wide!! So as I ate it would block up with food causing baaaad pain. Ct scan showed so I went and got emerg surgery.
Once the surgery pain is gone you feel 120%. Depends on on much intestine is effected I say get the surgery. I had 28 cm removed Ileum and some large intestine.