Undiagnosed and question about possible infection/odor

[Dutchgirl]

Hi,

As you can see in my username, I'm from the Netherlands. We don't really have a big forum about IBD in the Netherlands so I thought I'd register here.

Two months ago I had a stomach flu, or so I thought. It lasted a week, which is pretty long, but then it got better. So I slowly went back to my normal life... and then it happened again, and again, and again... Now it's turned into diarrhea with mucus (sometimes mixed with a little blood) pretty much every day. After that first week they wanted to know if there were any parasites, bacteria, viruses. Nothing came up. Then I had two bloodtests for CRP. Both times it was too high. I'm now waiting for my GP to decide what's to be tested next.

I've got a question and I haven't been able to find the answer. The mucus that comes out (and the stool itself) smells like wound fluid. I know what it smells like because I had an inflamed operation wound recently. Is this something you recognize?

 

[DJW]

Hi Dutchgirl and welcome.

Is your GP going to refer you to a GI specialist? At some point scopes with biopsies will be needed in an effort to make a diagnosis.

Sending you my support.

 

[Dutchgirl]

Thanks For your answer.

A referral to a GI is probably going to be the next step. I'm waiting for an answer from my GP. I emailed her, on purpose, because I don't really want to know the answer. Afraid they're not going to find anything and the diagnosis will be IBS.

 

[Linda23]

Have you had a colonoscopy yet? If it's crohn's, it'll show up from that. I think I know what you're talking about, so I hope your doc recommends a colonoscopy. It's better to know and be able to treat it, than the not knowing part.

 

[dave13]

Thanks For your answer.

A referral to a GI is probably going to be the next step. I'm waiting for an answer from my GP. I emailed her, on purpose, because I don't really want to know the answer. Afraid they're not going to find anything and the diagnosis will be IBS.

We don't want to hear we have crohn's disease,it sucks,to put it plainly.The thing about being diagnosed is that you know what you are up against.You and your GI can devise a plan instead of wondering.You want to be proactive so you do not suffer any more damage than you have already.

Good luck with your GP finding a GI.Let us know how it goes.

 

[Dutchgirl]

I don't want to have an IBD either. So I still hope it's a one time inflamation. Or it's just the consequenses of that stomach flu. But I don't want it to be IBS, because it's not really treatable, so it's probably going to be like this all your life without any understanding from your environment.

I don't want it to be an IBD either, because then I can probably
give up my future... I also have chronic migraines en chronic wounds from a pilonidal cyst. I'm exhausted...

 

[dave13]

We may have to alter our life with IBD but in no way do we have to give it up.I sincerely hope you do not have IBD or IBS,but if you do,it is not the end.I am sorry to hear about your other health issues and I understand about being exhausted.Physically exhausted,emotionally exhausted.Fighting takes a lot out of you.

Wether you have IBD or not,I hope you take advantage of the forum.This is a link for those who suffer from multiple illnesses http://www.crohnsforum.com/showthread.php?t=61456. There is a support group for those who suffer from migraines and undiagnosed too.Just click the 'support groups' tab on the bar above.

Many of us know what it is like to be misunderstood or ignored.There is great support here.It is true we are all different with this disease but we all need someone to talk to.I hope you reach out to the forum when you need to.

 

[Dutchgirl]

Thanks. I'll look into the support groups.

And I meant give up my future in combination with all those other illnesses. Well, it's not giving up of course. It's more like finding a new way to make your life worthwhile. Getting rid of the unimportant stuff.

 

[dave13]

It is very much finding a new way,isn't it? Forgive my reading more into your statement,I was concerned. The support groups are a good place to check out.Happy to hear a positive attitude! Feel free to reach out to me anytime.

 

[Lisa]

Hi Dutchgirl - I feel your concern about the future and the unknowns....but like Dave said, it is about finding a new way....through all my ups and downs over the years, I have faced challenges, had good and bad times....would I change things? probably not...because I probably wouldn't have my daughter and the current life I have....

Hopefully you will be able to see a GI soon, and get some more testing done - that is the key to figuring out what is going on. And who knows, maybe getting treatment for hte GI issues may help with the other issues - oftentimes people find out that the seemingly unrelated symptoms are actually related after all...

 

[Dutchgirl]

Yes, it's very much about finding a new way, Dave13. It's about being happy you were able to do the dishes in one time! Or feeling the warmth of the sun and be so happy you were able to go outside today to take a walk. Healthy people probably wouldn't understand.

I'll call my GP on monday (I am currently in another city). Today is a lousy day... been to the toilet 7 times already. Sometimes just mucus comes out.

 

[dave13]

Enjoy your accomplishments,they are personal victories.It may take us a bit longer to finish a task at times,but we get there.Definitely enjoy the warmth of the sun and your walks outside.Walks with my dogs improve my attitude and help me face the day...as well as a bit of exercise.

Monday is not too far away,gives you time to think of questions to ask your GP.

 

[Dutchgirl]

Exactly my idea: writing up some questions for my GP this weekend.

I get what you say about your dogs. When I have a good day, I watch my neighbours dog when she works. I can take the dog out whenever I want. :ysmile: I have a cat myself. Animals really help me.

 

[dave13]

I write down questions to ask my GI and colorectal surgeon when I see them.They encourage it.It's a finite amount of time we get to spend with the doctor and I want to make the most of it.It beats playing phone tag to get a question answered you wish you would of asked at the appointment.Plus I just don't trust myself to remember.

I agree,animals really help me too.My dogs have been there for me at some low times.They are so happy to see me when I come home from work.It makes a bad day fade away and a good day better.

 

[Dutchgirl]

Exactly. A purring cat on my lap does the same thing.


Is there anyone that recognizes the smell of wound fluid which I described in my first post?

 

[dave13]

I have fistulas and the drainage is rank smelling.You are asking about the odor of your stool,right? If you get no hits on the question,perhaps we can move your question to a place with higher traffic.Change the thread name to be specific about your question.I will tag Lisa on this.

 

[Lisa]

Thanks Dave....I copied the thread and added to the title.