Help don't understand anymore

[soconfused]

Hi I was diagnosed with crhons back in 2012 in the ti now the problem is the thing is uncontrolled 7 flares since diagnosed they have incrressed imuran to 150 mg dAily they have kept me on low dose of prednisone for months but this bit I can't understand every time I have had a warning of mouth ulcers start 12-24 hours before hand around 6 weeks ago I had a change in bowel movements from allways haveing soft stool to geting ribon then being hard a concrete within 24 hours now this has been going on for a while yes stupid me thought it's ok I can deal with it this week I started geting massive stabing pains in my lower right abdo thought it would go away then it got worse thought I would go to my gp cause I didn't think it was cd flare they rushed me to hospital suspected appendix they done X-ray and a ultra sound but they weren't to sure so they done a laproscopy to see if the appendix was inflamed well I woke up from surgery and get told appendix is ok but there serve active Inflammation in the ti Major crohns flare now this is where I'm confused I have no ulcers in the mouth I have never experienced this much pAin with the cd and never been blocked up with it I'm just wondering what ur thoughts are they are going to try and reduce the inflammation in the ti then a MRI and then talk about options cause they can't get it under control the word resection. Was mentioned but they want to get inflammation down what are ur thoughts specialy the change in bowel movements I'm sorry if there is spelling mistakes but very tired and can't sleep cause of the prednisone

 

[Saratay05]

Socunfused, sorry to hear you are having a rough time. I know how you must feel with the prednisone. Felt like I didn't sleep for 6 months while in was on it.
In my experience, limited as it is, I've found that all my flares come with different symptoms and without much warning. I wouldn't say your lack of mouth ulcers this time means a whole lot except maybe the location of your Crohn's has changed.
I go back and forth from diarrhea to constipation. My first resection surgery (before diagnosis) was from what they called a cecal bascule where the colon had twisted over on itself. It was extremely painful and caused a large amount of stool to back up. This I'm sure they would have seen in there while they were looking at your appendix. It seems you could have strictures that are backing you up and this may be what they are talking about resecting. An MRE would be a good test to see where the inflammation is and where you may have strictures. Have you had any other tests done this time?
Good luck to you. I hope they are able to give you answers soon. I'm sure it's very hard waiting:hug:

 

[soconfused]

They have done a X-ray a ultrasound went to do a ct scan but due to haveing over 10 in the last 3 years they stoped it due to radiation bloods have come back normal but that has allways been the case with me

 

[soconfused]

Thank u also for a quick reply and your help in this problem

 

[SupportiveMom]

Soco- have you been on any biologic medication? If the Imuran & prednisone aren't able to keep things at bay you may want to look into it if the doc thinks it can help your situation. Surgery can be scary and I'm not looking forward to them if that is what the future holds. I know if it does it will be because we have tried everything else. Salt water helps the mouth ulcers not be so irritating.

 

[gemling]

I agree with SupportiveMom, if Imuran is not controlling your Crohn's right now then it sounds like you need to discuss what viable alternatives you have with your GI specialist. Biologics tend to be the next step up.

 

[Daisy123]

I sympathise, having constant pain is horrid. All I can say is that if the worst comes to the worst, surgery could give you your life back. Nowadays it is minimally invasive and done laparoscopically and it is not uncommon to be in hospital as little as four days. :ghug:

 

[soconfused]

I have been on imuran 100mg daily then it flared again so they up the imuran to 150mg to daily and kept on pred for 8 months then flaired again back on pred this time they are upping imuran to 200mg daily for a week then blood test to look at 3tg levels aim for 250mg daily keep on pred 50 mg for two weeks then tappers down by 10 every 2 weeks right down to 5mg for min 6 months they are still waiting for app for MRI to be done the intern surgeon asked if anyone has talked about the surgery the problem he said cause the cd has been documented flares in the last 2 years that's not including the ones we have hid from the gi they are saying there will be some serious damage but I still can't work out y I keep geting blocked up if there saying all the damage is in the small bowel as for the mouth ulcers I have suffered them my whole life from as far as I could rember but no one could put the links together go figure never thought it was cd even though bloods at first allways when I was younger showing high inflamatiom markers I have found that useing black tea helps with the pain off the ulcers off cause not hot but cold I have tryed salt water, vegemite(Aussie) mouth rinses baby teething gels, pink ladies a spezia drink they use for Gail bladder attacks pure salt skin to skin contact if u name it I've probley tried it and have it here the tea puts a layer over the ulcers and last for about 20 mins but dose help with the pain the surgery dose scare me but they are saying they need to settle the inflammation down first or they will rupture as soon as they go to touch it and being imuno suppressed they don't want the complactions but I just can't work out how the small bowel can block u up I wish to thank everyone for there replys and help I just can't get my head around it or understand anymore