• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Undiagnosed and a bit scared - what's wrong with me?

Little Bear

Little Bear

:confused2:
Hi Everyone
I've had 'IBS' for years now (had to cut out several foods to control it inc. dairy, all cereals, processed sugar...although I still have a little sugar because I'm cheeky) and also have Ehlers-Danlos Type III.
December 2012 I started suffering from an inflamed stomach (they had a look with a camera) and had no diagnosis as to the cause (I was offered hypnotherapy to help cope with the pain...no thanks) and then last week after a couple of weeks with a swollen achey gut I had blood, quite a lot of blood, fresh and red with maroon red stools. I went to the dr and they did a blood test (normal) and a stool sample (not had result back yet) and examined me (said blood from colon, colon v.swollen). By Friday I was back with a lot more pain and older looking bood (but much less). Stools switch from normal to thin and soft, with varying blood from hardly any to saturated. I had a very fun conversation with the dr's receptionist on Friday:
Bear: Could I have a phone appointment with the Dr please?
R: We have none left today
Bear: Could I have an emergency one please?
R: What makes you think it's an emergency?
Bear: Well, I've been bleeding from my colon for 3 days...
R: oh, you've been bleeding from your colon for 3 days? How do you know you've been bleeding from your colon for 3 days? (sarcastic tone)
Bear: (resisting urge to reply "well, the blood was my first clue...") I saw the dr on Wednesday
R: I'm sorry, your blood test was normal so it isn't an emergency

I had to stop myself telling her she was wasted in a receptionist role what with her medical degree... (eventually saw Dr 6.30pm Friday eve and his jaw dropped at that story)

Over this weekend things settled (aka if I don't eat I feel almost OK) and then yesterday a bit more blood and back to thin stools. Today I'm normal again with the strong pain. Waiting on a colonoscopy, and found out my cousin died of complications from Crohns aged 42 (fairly rare I understand).

Other things I've noticed this last week:
I can't drink enough water. Constantly thirsty
gums went white and I was really drowsy (had iron supplement and recovered)
suffering intermittent hot flushes and sweating (on days when bleeding)
I'm an olympic weightlifter and if I can get past the initial pain and sweats, training seems to take blood away from my gut into my legs and gives me some relief

I went through the stages of grief with this over about 3 hrs and have hit acceptance pretty quickly (not going to lie, there were tears around hr 1), but I am still feeling a bit lost. I am ashamed to admit I hope it is Crohns, because then I have an answer and an action plan moving forward and won't have ridiculous conversations with receptionists. I will be ill anyway, so I'd rather know and not feel so blind.

This forum looks like somewhere I belong. Any comments, advice, guidance, anything - very much appreciated. I hope I can help contribute in future too

Bear x
 
lizbeth

lizbeth

Hey Little Bear :)

Sounds like you've been having it kind of rough this last while :( I'm sorry that this is happening. Thank you for sharing your story here, I have found the forum to be very supportive and friendly and everyone just wants to help, so I'm sure you will get some help very soon.

I can understand what you mean about wanting to know what it is so that you can deal with it and move forward, I don't think I have fully accepted yet and definitely still feel quite lost at times (like most of the time :)). How long do you have to wait for the colonoscopy? Have you tried switching your diet to bland low-fibre foods, it may help until you get your scope results, I will give you the link to the low-residue diet ino:
http://www.crohnsforum.com/wiki/Low-Residue-Diet

It might be worth asking your Gp to check your vitamin levels cos they can be affected too. Just a suggestion. For the pain the best thing I could suggest is heat, whether it be a hot bath or a towel just out of the dryer I find it works a treat, it won't take it away but will soothe it nicely.

I do hope you find out what you need very soon cos I really think it's the unknown that is the most worrying. I'm still learning about Crohns but there will be people here that can help you much more than I can. For now take care and welcome to the forum.:ghug::ghug::ghug:
 
Little Bear

Little Bear

Thanks for your reply, Lizbeth :)
I am waiting for a letter to book the colonoscopy. I've also noticed I get what feels like the beginning of a sore throat when it's all about to go nuts.
I wonder if I have Crohns or similar. This forum is such a fantastic resource :)
 
lizbeth

lizbeth

I think I have heard of others noticing things, like you mentioned your sore throat, before a flare? As to whether or not you do have Crohns, well only time will tell, once you have had the necessary testing and results are available, we'll just have to wait and see? It's frustrating waiting, I'm currently waiting on results of a small bowel series to see if I have any strictures and I'm not a very patient patient :). :ybatty:
 
Little Bear

Little Bear

Oh really? It'll be interesting to find out then. will I get to see the video feed when they do the colonoscopy? Are results immediate or will they decline to comment until there's biopsy results? I've googled what it might look like, because I'm a bit sneaky like that, and it looks like they'd at the least be able to say something was wrong. The Dr from an examination could tell my colon was badly inflamed (I could've told her that too!)
Oh really? What's a small bowel series? I hope for your sake you don't :) when I read about those they sounded like little internal volcanoes from the gut outwards.
I am with you - I am the least patient patient ever :) I appreciate when drs respond to me like I can string a sentence together too - a lot of them think the general poplice couldn't fathom words with more than 2 syllables. Just tell me it as it is! We're not stupid, just scared - there's a difference :) GOOD LUCK x
 
lizbeth

lizbeth

I suppose every Dr is different as to whether they will discuss anything at the time or decide to wait. I've known the guy that did mine for nearly 17 years from the diabetic clinic I attend and he was quite happy to have a chat with me and showed me things on the screen, like the seeds from some lovely bread I had eaten the week before!!! Won't ever be eating that one again lol.

The small bowel series was okay the worst part was drinking the barium, yuck! But the actual process was non-invasive and went without a hitch, I did feel quite shattered afterwards and went home to bed. I think my body is telling me there is a stricture, I know from ct that there is a narrowing but not what it is for sure, could be just inflammation. Time will tell.

I like to look into things as well and want to learn what is happening to me, I want to understand the language etc and will use it too if someone is being particularly patronizing, I had to use it as an inpatient when surgical Drs took me off my regular insulin, I had to fight with 2 of them and blind them with sensitivity factors and correction doses (don't think they knew themselves what I was talking about lol ) before they would let me go back on my own insulin. :)
 
You must log in or register to reply here.
Top