Could I Hang with the Undiagnosed Club?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

JenPen

JenPen

Joined
Aug 12, 2012
Messages
19
Hello,

I've been thinking about joining the Club for a few days, and as I was sitting here at 2am, with stomach pain, I thought I would join now, and get some advice about my problems.

About 10 weeks ago I started having stomach trouble beginning with vomiting and pain, followed by a large amount of diarrhoea. At first I assumed it was a stomach bug, but tests have ruled that out, along with C.diff, H.Pylori. Last week I had a scan for gallstones, again in the negative. My GP also suggested gastroparesis (I have been a diabetic since 1978, and hypothyroid since 2008), but I am pretty confident that this is not correct.

I have been having frequent bouts of vomiting, often after eating 'regular' meals, but not always. There is sometimes blood in the vomit. I'm also experiencing either diarrhoea or loose stools, several times a day, and after a long time on the loo there is sometimes blood and blood clots on the paper. Plus extreme stomach pains in the top of the abdomen, which is now permanently swollen. I have also lost about a stone in weight.

I think that is everything, :shifty:, and I would welcome suggestions, or help in at least ruling out/in some gastric disorders.

Thank you for your time,

Jen
 
Hi and welcome to the forum! :D

You really need to see a specialist as those are all possible Crohn's symptoms. Even going to the ER/A&E/hospital may help you get into a GI faster and they should be able to do some tests while you're there. Bleeding on one end is never a good thing let alone both ends. I really encourage you to seek emergency medical help as the vomiting and bleeding can be very serious (there are so many possible causes and its better to know now rather than wait). A swollen abdomen could also be a sign of a blockage (along with the pain and vomiting) so I think the best place to start might be emergency care at a hospital.

Keep us posted. I'm sorry you're going through so much.
 
Hello Crabby, and thank you for the welcome

I have already graced the A&E department near my home - it was an absolute disaster. I had had diarrhoea for about 14 hours, nearly non-stop, then started vomiting. I went to the emergency department and told them that I couldn't hold anything down and was a type 1 diabetic. Emergency situation, I thought.

They determined to test me for ketoneacidosis, then whisked me away to resus, had about 4 goes at putting the cannula in. About an hour in, both my boyfriend and I told them that my blood sugar was dropping, and I would have a hypo if I wasn't helped out soon.

I was moved to a private room (I had been sick 3 times since arriving), and then taken to x-ray before being given any glucose. I was in the X-ray room for more than 50 minutes due to a problem with the machine. Then I was back in the private ward, again no glucose. They did give me a saline solution though. Didn't hook it up to me, just left it in the same room. I assume it re-hydrated me through osmosis.

By this time I had been in A&E for four hours, and so my body rebooted (the liver kicks a large amount of sugar into the bloodstream, which makes you feel like death). Then they came in, said the bloods had been messed up, and that they wanted to take another round of bloods, from a vein in my groin.

I left.

However, I do now have an appointment with a Gastroenterologist (13th Sept). So fingers crossed. The GP thinks that the oral bleed is a broken vein caused by the amount of vomiting I am doing.

Jen
 
Good God there has to be a better hospital than that even if its in another town. o_O

Glad you have a GI appointment but if you start getting really bad again, use the emergency room at your disposal, don't wait even if you're wondering if you should go (I might pick a different hospital to go to though if you go again).
 
Hi JenPen,
Sounds like you are having a terrible time and not knowing what is wrong is probably just adding stress and anxiety to an already crappy situation. Crabby is right, if you get really bad before your appointment with the GI, go back to emergency - what are the chances the same incompetent staff will be working?? Be careful that on top of the diabetes, vomiting, diarrhea, etc. you don't also become anemic from the blood loss. Even small amounts of blood here and there can add up quickly.

Glad you decided to join the forum - you'll find lots of support here!
 
Hello,

I've never had much luck with A&E departments. I only went this time because I was just at the end of my tether, ordinarily I would rather avoid them. I think at this point I am just too fatigued to go another round with them - debating the theory and practice of emergency medicine is more than I can handle right now.

My other half, who has coeliac's, says that not being diagnosed was the worst part for him, once he knew what it was he found it much easier to cope with the symptoms. He was diagnosed through a 'lucky dip' of blood tests, no such luck for me, although I do have slightly raised inflammation markers, and my B12 is steadily sinking. Like a genius, I missed out on my 3-monthly injections, after a really bad night.

I'm glad I found this group, and thank you for the support so far.

Jen
 
You are b12 deficient? Do you know why? (because b12 deficiency is rare in the healthy population, it is a red flag for something happening in the terminal ileum where 99% of b12 is absorbed)
 
Hi JenPen, welcome, and yes you may absolutely hang out with us! I do hope you can get diagnosed soon and that you don't have to stay in the club too long though! It sounds like you've been through a lot and haven't gotten much help yet, and I hope you can get things rolling at your appointment next month. Like Crabby and others have said, please do go to (a different) A&E if need be. At the very least they hopefully could tide you over until your appointment with things like IV fluids and anti-nausea meds, etc. and might be able to run more advanced tests (the ER I go to has a CT scanner but I'm not sure if all ERs are like that).

You mentioned your GP - is he/she taking your symptoms seriously? If so, you may want to go to him/her in the meantime while waiting for your GI appointment. I'm not sure if things work the same in the UK, but my GP can run all kinds of bloodwork for me and he can prescribe certain things (pain meds, anti-nausea and anti-diarrheals and even things like prednisone) so that may be an option too if you don't feel comfortable with going back to A&E or don't feel like things are bad enough for that. I think my GP can even do colonoscopies although my GI was the one who performed my scope, but anyway - long story short, maybe your GP could help you get a bit better idea of what's going on and can run more tests while you wait out the next month. Your symptoms could indicate IBD/Crohn's (stuff like bleeding and unintentional weight loss are NOT part of IBS so don't let them tell you it's that) or it could be any number of things (infection, other illnesses such as Lupus or Addison's, etc), so you really do need to have more tests. Good luck with it and please keep us posted - and again, welcome! :)
 
Indeed your GP can order a lot of tests like a small bowel follow through or large bowel follow through, CT scan, MRI, MRE just about anything really (usually GI docs preform the colonoscopies and endoscopies).
 
There is some good advice in here, one question I have is what color is the vomited blood and how much is it? If it's red its probably the blood vessel like your doctor said if its black...means not so good. So wow it just hit me how incompetent that ER staff was, anyone who walks into an ER vomiting and vomiting blood gets their stomach pumped immediately, crazy. As an avid ER attendee my one word of advice is just relax and let them do what they have to do however long it takes. I have sat in an ER for 8 hours until a hospital bed opened up, if you are not bleeding on the ground or convulsing you are unfortunately a lesser priority. Just be patient if you have to go back. On a brighter note if you ever do get diagnosed with Crohns you will join the club that can never get life insurance or health insurance by yourself again!
 
Last edited:
Wow, there's a lot of replies to answer!

I do have B12 deficiency, however it is associated with Hypothyroidism. HypoT can suppress the digestion, so although I have not had the other symptoms connected to this, that is the diagnosed cause.

I saw a bad GP at first now renamed "Dr Wait", who did nothing except tell me stop eating. But I have a decent regular doctor who has performed all the standard tests and has sent me off for bloods of all kinds (four bottles this morning!). He has ruled out infection, as far as I know, and I suspect auto-immune, or immune related, simply because I have a long history of such illnesses, including diabetes, hypothyroidism and psoriasis. Basically my white blood cells' first question is always "Did you spill my pint?"

When I'm vomiting, I tend to be a priority simply due to the diabetes. In my teen years I could go from mild stomach bug to ketoneacidosis at the speed of light. They do tend to whisk you away if you are a type 1, which was why I was so surprised when they did nothing.

I'm vomiting/passing two different types of blood. Most recently it is a kind of hot pink, which I agree is probably just a burst vessel. However, I have also previously vomited darkish blood (I had a massive throw-up session which lasted about an hour), and I'm also passing definite blood clots. I can see them, about 5cm across and rather like tar or semi-dried eyeliner.

I've also been having some gyne issues, so I'm going over to that forum. It could be a little bit TMI for general viewing.

Thank you all for your replies and your welcome, I am glad to be a member of the club!

Jen
 
Hi Again,

Well, here I am at 2 in the morning again, unable to go to sleep due to stomach pain. Plus I am passing so much gas I am about to be twinned with Chicago :(.

I was feeling slightly more like myself this afternoon, and foolishly allowed my other half to cook me a gluten-free chicken/mushroom pie. Almost as soon as I had finished eating, I started burping, then retching. I was sick about 15 minutes after the pie had been eaten, and there was the ubiquitous small amount of blood in the vomit.

So I'm sitting here feeling very sorry for myself right now :(. Curses, curses, curses.

Jen 'The windy city' Pen
 
My Crohns pain was lower right, not at the top. I have never vomited with my Crohns. A good GI and Primary Care Physician working together will help you.
 
Hey JenPen,
I am sad to hear you are still having such a rough time. It really sucks when you start feeling okay and decide to try to eat something and then you end up in the bathroom with stuff coming out both ends! I bet you can hardly wait until Sep 13th and your appt. with the GI. Have you tried calling his office or having your doc call to see if they can move up the appointment? It's worth a shot - you are in such bad shape you need help now.

I know we are all different, especially with which foods we can tolerate and which will make us sick, but mushrooms are definitely a no-no for me. And chicken is really touch and go. Sometimes I can have a small amount - by itself - and I will be fine, but twice I ended up at the ER with a blockage after eating chicken. Like I said, we're all different but it might be something to consider, just until you see the GI and they get you sorted. Hopefully your other half has some recipes up his sleeve that you will be able to tolerate. By the way, are you taking anything to help reduce the gas?
 
Hello PattyLynn and Michael :).

My pain has mainly been in the stomach area, although I'm having lots of lovely cramps in the lower portion today. They kept testing me for appendicitis in the ER, and that was very uncomfortable the day after - a bit like I had a snooker ball just under the skin. But the pain is still mainly in that upper right hand section.

I'm just gutted that I was feeling better and now it has all gone downhill again :(. I could cry. I'm not sure about moving the GI appointment, that was the first they had available. But I am going back to the GP, since I've now got Oedema in my feet too. Definitely a systems failure somewhere.

I suppose I could be having a reaction to mushrooms. It was mushroom soup that nearly had me sealing off the bathroom last week. Funnily enough, my sister has a very bad reaction to fruit, of all things. Sends her running to the bathroom within an hour or so. Doesn't even need to be very much, a small strawberry yogurt will do the job. I certainly will talk to the gastroE about it all.

Something else to think about, I guess.

JenPen
 
Hello Jen

You probably won't read this before seeing your consultant but if you do please stress the vomiting of the blood. I've just been through the same thing 3 months ago and ended up in hospital for 10 days. Ask them to organise an upper GI endoscopy just to check that there's nothing going on in your esophagus. It will probably show nothing but you do need to know that everything is OK in that area. (I recorded what happened to me on my blog on the page "June 2012 - Bollocks! Back in hospital again!"

I've found the best way to get good treatment in A&E is to make sure you call an ambulance rather than just turn up under your own steam. You seem to get taken more seriously that way. I know it can be a big decision to call 999 but it can be worth it.

Hope you get some sense out of your consultant

Good luck, Nigel
 
Hello Nigel,

Thanks for the advice, I did mention the blood to the doc, and he is going to do an endoscopy. However, he did say that people my age don't get serious problems with their digestive system, so he thinks it is IBS. Boooooo.
I'm planning an all-mushroom diet from now until the endoscopy.
I read your blog post, that sounds like a pretty bad day, but the 'redcurrant jelly' thing has very familiar ring.
Still, if they ever do a vomiting Olympics, I reckon we're looking at gold and silver between us.

Jen
 
Hi Jen

I'm hoping not to compete in that event again so I reckon you're safe for the gold! I doubt I would make the finals anyway as the ambulance crew were not very impressed with my efforts and commented "do you call that a lot of blood?". It's a good thing we can keep our sense of humour in the face of adversity.

Nigel
 
What??? Young people don't get serious digestive problems??? There's a whole lot of people in the "Parents of kids with IBD" forum who would beg to differ. I'm with Star, time to find a new doc! Your first post in this thread says you've been a diabetic since 1978 so that means you're at least in your 30s, and 20s/30s is a really common age for Crohn's/colitis to onset. Vomiting/passing blood is DEFINITELY not a sign of IBS so there's another sign that your doc needs to go. He's ignoring serious symptoms. You said he's scheduled an endoscopy, so if it were me I'd keep that appointment but in the meantime I'd start looking around for a new doc too. Is this your GP or your GI? If it's your GI, go back to your GP and ask for a new referral to a different GI. You deserve to be taken seriously and not blown off with stupid "you're too young to be ill" excuses. Hang in there and keep us posted on how everything goes and how you're doing.
 
Hi. If you have D and blood in stool, I am hoping the doctor will also do a colonoscopy in addition to the endoscopy. Is your hypothyroid well controlled? (I recently had thyroid ablation and am still dealing with low thyroid issues ... I also get bouts of extreme abdominal pain, bloating, and constipation. Seems like the digestive system just stops working. I think it cannot be good for the GI tissue for food to be backed up for too long)
 
Hello all,

Thank you for your kind replies.

Nigel: Gooooooold! Can't blame you for not wanting to compete, I wish I could drop out of the event myself.

Starr and C-A-T: My other half said a similar thing when he got home, but we are going to wait for the endoscopy first. It was the GI, you have to be a complete fool to be a consultant in the UK, I think they take classes on it. To be honest, he asked me two questions about my diabetes before I'd even got my coat off, so I knew it was going to be bad. I'm 36, so I think I'm just falling between the two stools of 'age at diagnosis'. I've also just found out this morning that my aunt died of cancer of the Caecum, so I shall mention that to my GP. Thanks for your encouragement, my other half has already gone down this road with coeliac disease, so he'll help me push for a better solution.

Danny'sMom: He specifically ruled out a colonoscopy because it is IBS. Neat mental trick, eh? Hypothyroid should cause constipation and other digestive woes, but I haven't really had that, just the opposite. In fact, I had just got my thyroid meds sorted out when this hit me - maybe a three week gap, so I think perhaps the former was disguising this problem. Low thyroid can make you feel dreadful, so you have my deepest sympathy. Get lots of rest and join a support group - they can really help you through the tough times :).

Jen
 
Hello Jen

I thought you were joking when your consultant said that people of your age don't get serious problems with their digestive system. That is just about the dumbest, most misleading comment I've ever heard. Unfortunately digestive problems can happen at any age as many of the personal stories on this forum will confirm and can take so many different forms.

...and the mushroom diet? I try an avoid them as I've been told they can stick around inside you for several days. Yuk.

Nigel
 
Hello again Nigel,

No, sadly not joking. I think he had already decided on his diagnosis before he spoke to me, and nothing I said was going to change his mind. Good job I am bleeding occasionally, otherwise I would have got nowt.

I wish I could get a mushroom to hang about. Unfortunately it is either straight back out, or...well, you can imagine.

Jen
 
JenPen said:
I've also just found out this morning that my aunt died of cancer of the Caecum, so I shall mention that to my GP
Click to expand...

One of the biggest signs of cancer in the digestive system is blood, black or red it has to be ruled out. If he hears this and doesn't schedule a colonoscopy get a different doctor.
 
Hey JenPen, just checking up on you to see how you're doing. When is your endoscopy?

As for mushrooms, I usually digest them okay, but if I eat them multiple days in a row then I start to see undigested chunks of them in my poo. Apparently they're tough to digest, they're fibrous even though they're mostly water, and if you're not careful they can cause a blockage. So be careful if you're determined to eat them!

And I agree with the others, a colonoscopy is usually one of the first big tests they do for anyone having tummy troubles, and it's troubling that your doc won't do one. I stand by my original suggestion, have the endoscopy and then get a new doc. Good luck!
 
Hello Cat-a-tonic.

Thanks for asking about me. I've started eating vegetables again, and I've also started vomiting again, with blood, so I'm not feeling great :(, in fact I'm sitting up at 2am, thinking "This seems very familiar". The other half has banned mushrooms completely from my diet, I don't think he was taking the diarrhoea seriously until the nuclear strike on the bathroom after mushroom soup :).

No date for the endoscopy as yet, but I'm going to the GP at the end of the week with a few questions. New Doc seems to be the consensus, so I shall ask for a second opinion there. Is it really worth having an endoscopy with a doctor who thinks nothing is wrong?

On the other hand, it might be fun to continue with the vegetable bender and then be sick in his lap..."Ibs? Try this! Bluuuurrrrghhhhh".

Hope you are not feeling too bad yourself,

Jen
 
I would recommend keeping the endoscopy with this doctor purely due to the wait time. Have your new doctor pull the records, he could always screw it up but I find theres more to screw up with a colonoscopy than endo.
 
Have they ever checked you for gastroparesis or celiacs disease?? The vomiting after you eat could be a sign of gastroparesis. Do you ever feel really full after only eating a small amount of food?

Dont feel bad, I have see a slew of crap doctors who I really believe got their degree from a cracker jack box! I am having intestinal issues as well, gastro also thinks it is IBS. I am not really sure. I see him again in November so I have a bit of a wait. Hope you get to the bottom of this and get to feeling better soon.











JenPen said:
Hello Cat-a-tonic.

Thanks for asking about me. I've started eating vegetables again, and I've also started vomiting again, with blood, so I'm not feeling great :(, in fact I'm sitting up at 2am, thinking "This seems very familiar". The other half has banned mushrooms completely from my diet, I don't think he was taking the diarrhoea seriously until the nuclear strike on the bathroom after mushroom soup :).

No date for the endoscopy as yet, but I'm going to the GP at the end of the week with a few questions. New Doc seems to be the consensus, so I shall ask for a second opinion there. Is it really worth having an endoscopy with a doctor who thinks nothing is wrong?

On the other hand, it might be fun to continue with the vegetable bender and then be sick in his lap..."Ibs? Try this! Bluuuurrrrghhhhh".

Hope you are not feeling too bad yourself,

Jen
Click to expand...
 
My daughter has had similar symtoms and I now suspect it may be Whipple's disease. Google it and see if anything fits. An endoscopy, biopsies and a PCR test are required to confirm but nobody seems to look at the possibility of Whipple's.
 
Hello everyone, thanks for all your messages!.

Thermo, thanks a lot for your great advice about keeping the endoscopy appointment. I've spoken to the GP today, and he assures me that the surgery will not be performed by the GI, so I think I should be alright with that.

I had a long appointment with him today, and he seems as unimpressed with the answer as I am. He agrees that it is absurd to try and link the bottom bits with IBS, and the top bits with gastroparesis (the GI said "Some diabetic complication"). Couldn't be sitting watching rugby on June the 9th and develop two completely different diseases at the same time. He said that if there is no result from the endoscopy, then I will probably need a second opinion. YAY!

Ihurt: thanks for your message, but I don't believe it is gastroparesis. I'm vomiting at 4.30am, just clear fluid plus a little blood, and then in the morning, again with no food present, so that tends to rule out a slow emptying problem. Plus my blood sugars always go up after I eat, so I think it must be something else. Getting the degree from a cracker sounds about right. Goodness knows how some of these doctors ever get employed.

Planner: Hi, thanks for the message, it sounds at least more reasonable than IBS, but there doesn't seem to be any vomiting. Not sure about the mechanism of contagion. I'll keep it in hand until the endoscopy results are in.

Hope you are all feeling well today,

Jen
 
So your illness hit you rather suddenly on June 9th? How interesting, my illness hit me very suddenly on Oct 9, 2009 - a day I'll never forget! Although I'm still technically undiagnosed, unofficially I have IBD and am being treated as such and I'm responding well to that treatment. So in my experience it seems that IBD can indeed come on very suddenly like that. So don't stop pursuing Crohn's/colitis as it sounds to me like that's a definite possibility for you.

I hope the endoscopy and/or second opinion gets you somewhere. It sounds like you've got a good GP at least so that's a good start anyway - at least there's one doctor taking you seriously and working with you, even if your GI sounds like an idiot. :p Keep us posted on when you get the endoscopy scheduled, I hope it's not too much longer. Good luck!
 
Yes, my illness appeared out of a clear blue sky. First thing I said that morning was "I feel sick". I threw up so much my legs were shaking. Then I mixed it up with some diarrhoea, and that is how it is now. My fiance's aunt has Crohn's, and his family seemed clear that it 'sounds like Crohn's', so I'm certainly not going to let go of IBD.

I've got a great GP, I think he is just as frustrated as I am about the 'diagnosis'. I said I would have to be quite unlucky to have two things wrong with me at the same time (the IBS and the 'diabetic problem') and he said that coincidences like that do not happen in medicine! He certainly made me feel a bit better about the whole situation. On the downside I forgot to ask him about some medication for the psoriasis in my ears. Drives me bonkers when it gets there.

He has prescribed me some stronger anti-vomiting medication, and also some IBS stuff 'to go through before the endoscopy', so I think he means to rule all that out before a second opinion. Anti nausea stuff is great, so I'm keeping that. The Mintec stuff tried last night and this morning is giving me hiccups and stomach pain, plus belching and wind, so we're passing on that. The other stuff is an anti-spasmodic which I have not tried yet.
 

Similar threads

C
Atypical Crohns
Replies
2
Views
968
Chrissie47
C
W
Bowel disease and inflammatory arthritis
Replies
2
Views
2K
whaleroad
W
A
31 yrs on.....
Replies
0
Views
324
aryex
A
Papantoine
Neglect?
Replies
0
Views
204
Papantoine
Papantoine
J
I suspect I have IBD...GP has given me antibiotics...could ABs make it worse if I'm right??
Replies
8
Views
2K
whaleroad
W

Latest posts

Back
Top