Crohn's Disease with clear colonoscopy

[jinkx]

Hi, really don't know if I should be here! I've got big problems but they can't find out whats wrong with me. For a brief history here goes- 10 years ago I started suffering with stomach cramps and heart burn so they did an endoscopy and found I had a dodgie esophageal valve so put me on omeprazole. Then without tests said the cramps were due to IBS and went on spasmonal for that. Things were ok for a few years then I started getting very painful periods so had scans done and was diagnosed with endometriosis. The IBS was manageable with a bad episode every 2 months or so but I could control it with diet.
The fun and games started last December when I had what I thought was a bad case of IBS, with diarrhea for weeks. Then to make matters worse I had a holiday booked to the Gambia which ment me taking malaria tablets or 2 weeks- 1 malaria tablet= 2 Imodium in my case. Between December and February I lost 18lb. Then it got much worse, every time I go to the toilet there is blood. My total weight loss since December is now 34lb with 7lb in the last 3 weeks, and I'm in constant pain after going to the toilet with it mainly being diarrhea. I've had a colonoscopy and biopsies taken with both coming back clear, I've got a high white blood cell count and stool samples came back clear of parasites. Was supposed to go for a ultra sound scan last Friday, went to get in the car and for the first time ever couldn't control my bowels how humiliating is that for a 36 year old.
This is really getting to me now I'm trying to run my own business in these hard times and can't afford to keep having time off.
I suppose the question I've got for you guys is has anyone else had a colonoscopy that's come back with clear results but you still have been diagnosed with crohn's? Or do you have any other condition that's not crohn's but sounds like mine? I know I should let the doctors take their time and work it out but really I can't continue like this, scared of leaving the house in case I s*** myself!
Any help will be greatly appreciated, thanks

 

[Jeff D.]

Welcome to the forum. Anyone with stomache pains or problems can come on here. Now I don't know where you live but if you live anywhere near Tennessee try and go to Vanderbuilt Medical Center. The staff there is very professional and they want to help you. They are also in the top 20 hospitals in the country. Best of luck and I hope you figure out what you have soon.

Jeff

 

[jinkx]

Unfortunately I'm just down the road in the UK, little bit far for a day out but thanks for the advice. LOL

 

[beth]

Well... you can get Crohn's anywhere from your anus to your mouth and all points in between. I suspect I had Crohn's a few years which was diagnosed as a suspected stomach ulcer, but given what I know now I think was an ulcer in my small bowel. So I would say just because your bowel is clear, doesn't mean you have not got Crohns - they just haven't found what/where it is yet. Endoscopes can't reach into the small bowel.

Given your self-employed/etc I'd wonder if you can get you GI people to treat you like you do have Crohn's i.e. put you prednisone and azathioprine to see what happens - and schedule more tests.

 

[NatalieMT]

Good to have you on board! Like Jeff says although this forum is called 'Crohn's Forum' really anyone with intestinal problems is welcome here.

I was diagnosed with Crohn's, by colonoscopy and biopsy in March but I too suspect I had been suffering a few years prior to that, even though I've only had realy problems for a little over a year. Some of my symptoms however sound reasonably similar to yours, bad D, bleeding, a lot of pain and quite extensive weight loss among other things. I've actually been told my white cell count is quite low because I'm reasonably underweight now. Haven't had a lot of luck with treatment so far but I'm persevering.

Having said all that I believe there are other people here who have had totally normal test results but their doctors have chosen to treat them as a Crohn's patient anyway. I guess if doctors truly can't find a cause for your symptoms there has to come a point where they initiate treatment. Perhaps other tests to ask about would be a capsule endoscopy, where you swallow a pill cam which images right the way along the digestive tract. I hear it's not very good at imaging the large bowel but good for the small bowel, a small bowel follow through may all highlight problems in that area. There are also things such as CT and MRI scans which may be a some diagnostic use in your case. I wouldn't give up hope!

In terms of the accident problems, many people here including myself have the same issue. Useful hints I've picked up, carry a change of clothes (especially extra trousers and underwear!) in your car boot, along with toilet paper/wipes, even a childs potty incase you feel the urge in time to stop and get out of the car. If you were really worried you could also get like incotinence pads to put on the car seat. In the UK there is an organisation called the NACC (see nacc.org.uk) who issue 'Can't Wait Cards' to show in shops to ask if you can use their toilet urgently in a crisis, through them you can also get a radar key which opens locked disabled bathrooms throughout the country. Might be useful to have and make you feel a little less on edge when out.

 

[jinkx]

Thanks for the advice I'm glad there are people out there who understand what I'm talking about, gives me hope. x

 

[Procyon]

Hey, welcome aboard. Sorry to hear that you're having such a difficult time. Have your doctors looked into the possibility of celiac disease, out of curiosity? Just because I've read that sometimes celiac disease is misdiagnosed as IBS, which you said you were diagnosed with a while back.

In any case, I hope you find some relief soon. Hang in there, kay?

 

[jinkx]

Yeh they checked for celiac disease, wish it was that then my life would be alot easier!

 

[Guest]

hello Jinkx & welcome! sorry you're suffering so much right now

a couple of thoughts.. i know you say you've been suffering for years, but how long recently has your consultant been trying to diagnose? sometimes it can take a while, and numerous investigative procedures before Crohn's is found, or in fact any definite diagnosis. if you think your consultant isn't doing everything he/she can, you're entitled to go to a different hospital/consultant.

it might be possible, given that the symptoms are bad enough right now to class you as 'incontinent' (i know that sounds awful but bear with me), that you may be entitled to DLA and/or other benefits which might help you financially if you can't work properly at the moment. the stress of feeling you HAVE to work to keep a roof over your head etc might actually be making things worse - Crohn's & IBS are notorious for flaring when we're worried or stressed out.

i would agree with Natalie that it might be a good idea to contact NACC, the 'Can't Wait' Card is a great idea, plus NACC might have some advice for you too.

whereabouts in the UK are you, if you don't mind me asking?

 

[jinkx]

I'm in shropshire just outside shrewsbury.

 

[NatalieMT]

Oh you're only about 20 miles from me! I recently changed consultants to a totally different hospital also, although my problems aren't totally sorted I feel things are moving in a more productive direction since the swap. It might be something to consider if you don't think you're getting the best and most appropriate care.