My story

[Lynn2012]

Hi new here,
Had symptom for a year but did nothing about it, then in October 2012 I ended up in hospital to get my appendix out ,well my appendix were fine so after further laparoscopy investigation they said I had crohns . So I was started on prednisone they sent me for MRI ,ct scan, small bowel series they found penultimate loop of ileum thickened with fat warping adherent to pelvis and narrowing. After starting to taper off prednisone the the pain was coming back so was sent for a colonoscopy and end up with blockage, so in November 2012 I when to hospital to have a small bowel resection they removed 35cm of of small bowel and I woke up with a illiostomy bag which was fine I had it for three months with no problems. in February 2013 I had a ileostomy reversal every think when good and was going great up until 8weeks ago when my BM started to change and I got the Diarrhea back again and started getting cramps and mouth ulcers. When to GI for six month check up told him what was going on so he did an colonoscopy and said I have no sign of crohns there is scaring there from the resection and illiostomy but other than that everything is fine. He said to get B12 checked in 12 months and I no longer have to see him unless it comes back in years to come. He said I will get Diarrhea occasionally from eating fatty food because of the bowel removed, but I am not eating fatty food at all and I can't seem to get that through to him.That's great that he said I no longer have crohns but just don't under stand why I am getting all the symptoms back.

 

[Jennifer]

Hi Lynn2012 and welcome to the forum!

I'm sorry to hear that you're not doing well so soon after your take down surgery. Did your GI suggest anything to actually treat your Crohn's? Surgery only removes damaged portions but Crohn's will always be there as there is no known cure so I'm surprised you're not on some sort of treatment plan. A colonoscopy only sees so far into the intestines so if your GI didn't see anything after the scope then they should have done another test to see if the cause is further up (like an MRI or CT scan).

It sounds like your GI isn't listening and isn't willing to find the actual cause of your current symptoms. If your GI continues to not listen/help then you should seriously consider finding another GI.

They could also easily check your B12 right now and continue checking it. Mouth ulcers, diarrhea and stomach upset could be a sign of a B12 deficiency so since you already have those symptoms it should be tested now (to at least make sure its not active disease and start supplementing the B12). Since you've had part of the ileum removed you'll likely have to supplement B12 since that's where its mainly absorbed but it would be best to know what your number is before you start supplementing. Its possible that oral supplements wont work so you may need to have B12 injections (could have it done once a month or once a week, depends on how low it is). If your GI isn't willing to test it then ask your regular doctor to test it.
http://www.webmd.com/food-recipes/guide/vitamin-b12-deficiency-symptoms-causes

I hope you get some answers soon and start feeling better. Keep us posted.

 

[Lynn2012]

Hi Jennifer thanks for the welcoming
To answer your questions my GI did not recommend any treatment for the crohns just said I not longer have it and I don't need any meds. They did bloods before the colonoscopy and said they were fine. I really don't think my GI is going to listen as I spoke to him again about the symptom I was having which include pain around where the illiostomy bag was and he said to go to my regular doctor as It has nothing to do with the crohns , anyway after I had a solid BM the pain went so I am thinking a bit of scar tissue so I think I will look for another GI. Everything has just happened so quickly just don't really know if I need medication or not or if the diarrhea , mouth ulcers and occasional pain cramps is something I just have to deal with. Bit confused really. Sorry for the long reply

 

[SarahBear]

Welcome to the forum, Lynn!

"You no longer have Crohn's," is definitely not an accurate statement. Surgery is not a cure - it's a treatment. After surgery, it might come back at any time (and also it might never come back). You still have it; no signs of it would mean it's in remission, not that you no longer have it.

I agree that further tests should be done. Your doctor doesn't sound very helpful at all. I think you're right to look for a different doctor. You deserve to be taken seriously.

How often are your symptoms occurring? In regards to your mouth ulcers, are they constantly healing and reforming or are they the same non-healing ulcers?

:hug: I hope things get better for you soon!

 

[Jennifer]

I'm glad that you'll be looking for a new GI because this one sounds terrible. In the meantime definitely go to your regular doctor and have them check your B12 to make sure that the mouth ulcers etc aren't related to that. If it is low then you can begin supplementing and hopefully some of your symptoms will go away.

Scar tissue causing the pain is a very real possibility so if it happens often try to go on a softer low residue diet to help reduce the pain at least.

Keep us posted.

 

[Lynn2012]

Hi SarahBear
The mouth ulcers are almost healed at the moment have been getting one every couple of weeks at the moment if I eat anything I feel like there are little pin holes in gums they are so sensitive but the feeling only lasts for a short time then settles down.
Will try and get into doctor later this week will keep you posted thanks

 

[Lynn2012]

Hi Jennifer
I will look up the low residue diet and give it a go. In your option should I be on medication as a preventive or just go without

 

[Jennifer]

Maintenance medication is up to you but I did continue medication after my resection. I'm not sure I would have gone 14 years (in remission) had I not been on maintenance meds but I do think it played a role in keeping me in remission. That's what maintenance meds are for, to help keep people in remission so the disease doesn't continue to cause even small amounts of inflammation which can slowly build up more and more scar tissue over time.

Its definitely something I would discuss with your new GI (hope you find one that works for you).

 

[Catherine]

Tagging DustyKat for you. Dusty is a mum from NSW with two young adult children who both have had surgery for Crohn's.

 

[Lynn2012]

Hi everyone
We'll i spoke to someone this afternoon and they have gave me a name of a new GI which they said is really good. So just have to get an appointment fingers crossed it won't be to far away.. Thank you all it's great just to have some one that doesn't think your going mad or doesn't understand