Still undiganosed after ten years

[redmazzy]

Hi
I've been having problems with my bowel for about ten years. I won't go into the detail too much but I get intermittent partial bowel blockages sometimes. That's the worse case scenario. I assume they are partial otherwise I'd be dead by now. They usually manifest in a pain that gets increasingly worse in my small bowel then after about 12 hours of pain I usually start to throw up, no diarrhea. Last time it happened I was on holiday in Greece and I was ill for four days, not being able to eat or keep water down. Most of the time I slept as I was so fatigued. Afterwards I couldn't eat a meal without feeling full very quickly and a lower part of my bowel hurt like hell after drinking water or eating. I think holidaying is tricky as you are exposed to different bacteria which obviously triggers it off. I used to get these symptoms more often before I worked out what foods would make my gut worse, now I avoid those things and don't really drink alcohol I rarely get symptoms, except on the first two days of my period where any food I eat will cause a lot of bloating and pain, I get pain after eating often on these days, on occasion I have experienced a partial blockage resulting in throwing up. If I drink near or on my period it makes it worse.

I'm going for a second round of tests and everything comes back normal. They think I have IBS, I'm pretty sure it's not... Although I do think most of the time my IBD is dormant, I only get problems intermittently, which is obviously making it impossible to diagnose.

Just wondering if anyone else has a very mild form of Crohn's that took years to diagnose. How did you get your diagnosis in the end?

 

[valleysangel92]

Hello, welcome to the forum,

It sounds as though you may have a narrowing somewhere in your bowel, what you are describing is very much like what I experienced when I had a stricture at the end of my small bowel.

You mention you have had tests, can I ask what these were? It is possible for IBD to be missed on blood tests or simple X-rays, so it may be that you do have something going on and they just haven't done the right tests yet.

It is common for IBD to go undiagnosed, I was undiagnosed for 5 years and when I finally was diagnosed it was so bad that I had to have surgery as meds wouldn't be able to help. Even moderate - severe Crohns or UC can go undiagnosed for a long time.

I think its unlikely that what you are describing is IBS, and I would advise asking what other tests are available for you, if need be you can ask for a second opinion if your current doctor is unwilling to do anything more for you.

Have you ever gone to A&E during one of the suspected partial blockages? Really if you suspect something like that you should get medical attention. It sounds as if things are getting stuck somewhere and the only way out is for you to vomit. I know you say you think the blockages are partial, but that may not always be the case, a full blockage can resolve itself, so it is possible you have had a few full obstructions and it is possible that next time it won't fix itself. At the very least, seeking medical attention during one of these episodes may help them to give you a proper diagnosis.

 

[redmazzy]

Hi thanks for your reply

I have had a battery of tests;

Barium meal – didn't show up any strictures
Two MRI's
Pill cam
Colonoscopy
Gastroscopy

Various stool tests and blood tests.

I've been to A&E quite a few times when I was bad, vomiting, nausea and fatigue. I generally will always go to A&E as soon as I start vomiting, on occasion one vomit can resolve it, other times it'll just not stop and I have very bad nausea and pain that strong painkillers can't contain (30mg cocodaomol). They usually find my white blood cell count is up and give me antibiotics, anti-nausea meds, fluids and morphine for pain. I have seen on my A&E notes they described "dilated bowel loops" and "obstruction".

The first time they immediately thought IBD because I have ankylosing spondylitis and it's common to get an associated IBD. But all the tests were normal. The only change they noticed was my bowel loops are more angular than they should be.

Yet they can't find the cause. I think it's due to it being very mild and dormant most of the time.

 

[valleysangel92]

Another option is something called a white cell scan. They take some blood and remove the white blood cells from it, then tag them with a mildly radioactive substance and then re-inject them and scan using a gamma camera to see where the white blood cells have gone. If there is an area with a high concentration of white blood cells then there is inflammation active in that area. It's an old school scan that they don't use very much now, but it is very accurate. It found my inflammation when nothing else could trace it, and it got me onto my biologic treatment. Of course it may not do that for you but it's low risk and only takes a day, so it's really worth asking about.

 

[redmazzy]

I think a capsule endoscopy is the same as a pill cam right? I swallowed a pill shaped camera and it transmitted photos to a pack on my waist. I had that many years ago. That was the last of the battery of tests I had and it showed up nothing.

I've not had the white cell scan though. My main problem right now is getting enough time with the consultant, I see a very good consultant at St Marks hospital, but the two times I've been I've seen a registra, each time they were different people.

Yesterday I waited two and a half hours and then saw a different registra, it got quite heated because he was rushing to get through my history (which is long and complex) and trying to diagnose me in ten minutes. He told me I probably had IBS, I said do people with IBS get pain so bad they need morphine? Or obstructions? He then looked a bit sheepish.

Anyway, Professor Hart came in at the end and suggested we test my stool regularly, as they found a marker was slightly raised, if it continues to be raised they will do a colonoscopy under anaesthetic. I thought that was a better idea than anything else he offered.

He also wants me to go on the FODMAP diet, even though I have spent years going to nutritionists which I paid for myself, I think my diet is fine and I don't have any major problems day-to-day as I look after myself and eat according to what my gut can tolerate. I think he basically offered it because he's not listening to me, I don't have any problems day-to-day except on the first two days of my period, which I manage by using pain relief and eating very carefully. Whatever it is, it's dormant, so I'm not there for help just to find out what's wrong.

I also take Humira for my AS, I think my gut was slightly more sensitive when I wasn't on Humira, I had to be super careful then, and I did loose weight, possibly because I became a bit scared of upsetting my bowel symptoms because I knew arthritic pain would ensue.

 

[valleysangel92]

Yes sorry I re-read your post and edited mine before you replied again. It is possible though that things have changed since the last one so it may still be worth a go.

I highly recommend that scan, Mri and colonoscopies and a pill cam missed my relapse but a white cell scan found it.

I'm familiar with that problem, I used to get it all the time with a previous consultant I was under. He never had time to see me even when I was admitted and I swear he thought I was making everything up until I got so sick I had to drop out of uni.

It may be that the humira is keeping it at bay a bit as it's a fairly common treatment for IBD. Do you ever get given steroids? If so, do you notice any improvement with your gut?

As for diet, some people find that following a specific diet helps, others, like me, just know what they can and can't tolerate and avoid what makes things worse. I noticed you said you take codine for your pain, just be aware that this can block people up so keep an eye on that as well.

 

[redmazzy]

Yes I think they should repeat some of the tests, I guess they have to decide what's worth repeating costs wise as I'm not really in a serious state right now.The strange thing is with Humira, the problems started soon after I started taking it, which might be coincidental, but I did have a year off Humira last year and that's when I found it didn't really help being off it either, I'm sure it made my last flare last longer.

I'm going to try and see my consultant privately, so I can actually speak to her in person and have a WHOLE HOUR, imagine ;-)

I might try the FODMAP, see how it goes, it it is very restrictive.

 

[redmazzy]

I ended up seeing a specialist via the NHS and then managed to go privately on my boyfriends health insurance. The specialist sent me for an MRI and now they've rung up saying they want to do a CTE scan. The NHS appointment was just sort of, well your not dying so we'll just keep an eye on you. What a difference private healthcare makes.