Advice please am scared..

[Henry01119]

advice please am scared..

Hey guys I am Raj I am 27 years old from West Yorkshire England..am new to the site..I have a fistula right now on my left bottom cheek which is going to be operated on soon..but my surgeon is sending me for a colonsopy first to rule out crohns as I have bad bowel movements before operating on my fistula.. Also sometimes my body hair falls out too allover am scared about that aswell??
Now the thing I am worried about is I might have crohns because my bowel movements be like porridge when it comes out and am really scared and sometimes i got diarrhoea when I eat certain takeouts like Donner Kebab etc...
Now I dont know what bowel movements like when having crohns just wondering is that a real worry and whats your best advice? I am glad I found this site and all I can do is wait for my tests now..but just general advice guys what do you think please thanks??

 

[kjhngisd]

Hi Henry.
sorry for your fear and pain. It's understandable.
As you say, you'll just need to wait for the tests. you'll see on this forum, but waiting for tests is part of the whole thing.

As for the hair loss, that's not unheard of. My wife is the Crohn's sufferer and she has experienced that. She ended up taking extra vitamins -- D and Iron, mostly - and that helped a lot.
Also, you may want to ask to check if you're anemic -- that will cause hair loss too.

Be well, Henry.
--kevin

 

[Nyx]

Hi Henry,

It's great that you're going for a colonoscopy to find out exactly what's going on. Some people with Crohn's have diarrhea, and some have constipation...and some have both! Some have pain, some don't...some get fistulas and abscesses, some don't. This disease is all over the map in regards to its symptoms.

My advice, lay off the things that you know will give you diarrhea and wait for your test.

Good luck with it! Hope they get you sorted out soon and you get some relief

 

[Jerman]

Welcome to the forum, Henry I am glad that you found this place it has been a wonderful place for me. Do your best to relax as you wait for the seemingly endless tests, as stress will negatively impact your gut. Be a strong advocate for yourself with the docs and insist on test after test until they find out whats up. Good luck and strong wishes for your good health.

 

[Lydia]

I didnt know you could get a fistula without having crohn's. I know you can have crohns and not have fistulas. Hmm. I learn something new everyday.

I hope you find some answers. Sometimes its half the battle.

 

[Astra]

Hi Raj
and welcome fellow Brit!

Yes I agree with everyone, try to relax now cos stress will make your symptoms worse, you are on the right tracks and are going to get a scope, and hopefully the right meds.
In the meantime, have a look around the forum for info, especially the Low Residue Diet which, if you try, will give your bowels a bit of a rest and calm the diarrhea.
I'm afraid your Donner Kebab days are over my friend! A huge no no for a Crohnie!
good luck and we'll see you around the forum
Joan xxx

 

[beth]

Concur with the others - be cool! Fistula's and Crohn's are linked, although as someone pointed out you can get abscesses and fistula's without Crohn's. When I was diagnosed tho it was pretty obvious to the consultant that it was Crohn's even before the tests.

Dont despair too much. Perianal fistula's are a real nuisance but can be sorted, eventually. It took 3 surgeries, albeit minor, for mine to go away!

Good luck.

 

[Henry01119]

Hey guys I am really scared right now and am worried...I mean is this just me or worrying times whats ur advice as a whole..
Joan I added you on facebook.

 

[Crohn's 35]

Hi Henry, welcome to the forum. You are scared and we all understand that, but as Jerman and others say you have to remain less stressed. I have had Crohns many years and I have a porridge type bowel movements most days. When bm floats it is mostly fat in your bm, and if it sinks it is fiberous, which is better than floating. Constipation is a sign and so is Diahreah. Do you have pain or discomfort when you have bm's or on your right side or belly button area?

I know it is hard to wait , we all have to from time to time. Hang in there.

 

[Astra]

Hi Raj

Im so sorry sweetie, I didnt realise it was you! Request me again and I'll accept!
so sorry.
what is it? what's worrying you? try to chat on FB, yeah?
xx

 

[Lydia]

Are you on steroids like prednisone? I find that makes me anxious and scared at times.

I understand being scared, especially when you havent been diagnosed yet. You may find you feel better when the monster has a name.

 

[teeny5]

Welcome to the forum. I know it is easier said than done, but try not to stress. Look at the tests as a means to get yourself treatment. They need to test you and though Crohn's isn't curable it is treatable. Hang in there.

 

[Tweaks]

I know it sounds difficult but you have to relax and know that you'll get better. Everyone has those days where you think the worst but you have to realize that you can only get better..

We're here for you, don't be afraid to ask any questions =]

 

[ameslouise]

Hi Raj - I think we have all been really scared at times, especially waiting for a diagnosis. Searching around this forum may help you feel better as it will give you an understanding of what kinds of things other people have been thru.

And mostly it will show you that all sorts of people have Crohn's, we live our lives and try to be normal people. Some days are better than others. And we are all here to support each other and help each other thru those hard times.

Hang in there. Be strong and feel free to vent to us all you want!

- Amy

 

[Susan's mom]

Hello Raj,
I am in the same boat as you. well it is not me it is my daughter she is only 17. we have been having tests done for months now. We still have no answers. I am scared as well. My advice to you is to pray to whom ever you pray to. Ask that higher power for strength to get you through. Hang in there, I do know that is easier said than done. I am with you in your anxiety. please use this site as a venting tool. I know I have and I get great advice and just kind words. All of my daughters tests keep coming back normal but she still has ALL the symptoms of Crohn's. My daughters DR keeps trying though and if your DR is a good one he/she will keep looking and get you an answer.

 

[Henry01119]

I just want to ask everyone is it normal to get porridge like movements with crohns or can it be lumpy too??
Thats what I mean Susan's Mom if it comes back normal does that mean shes ok or you still waiting for an answer??

 

[Nancy Lee]

Hello Raj and welcome to the Crohn's Forum.

It's hard waiting for tests to be done and then to get the results.
Especially with Crohn's the symptoms can be all over the board.

Yes you can have porridge movements as well as formed ones too with Crohn's.

Try to be patient and wait for the test results.

Good to have you here!!

Hugs~Nancy

 

[Henry01119]

Ok thanks am just worried..right now am so scared.

 

[Henry01119]

Anymore advice??

 

[Astra]

Raj

You need to relax and be patient, that is my advice. A scope will give you answers, in the meantime, cool & the gang!

have you got specific questions?

 

[Henry01119]

Yes I am still shredding bare hair you know and loose stools alot.

 

[Henry01119]

waiting for the colonospy now

 

[Jerman]

I now how frightened you must feel, I sure was when my trial with this stuff started over a year ago. Seems silly to complain about only one year with symptoms but it has been rough. No worries about the colonoscopy though the hardest part is cleaning out. You will likely spend hours on the toilet the night before but you dont remember the actual scope test, so no anal invader nightmares. :ylol2:

The scope is a great diagnostic tool for many but as someone mentioned above, the symptoms are varied across the board. Good luck and try to stay calm, stress will definitely make the malevolent MR.BROWN flare up and make things worse.

 

[Dexky]

test results

Raj, I'm new on here. My son has crohn's and waiting on the test results is almost as frustrating as the symptoms. Then when you get them they are subject to change and usually do. At least thats been our experience.

 

[Regular Joe]

Hi Raj,

Being scared is also a symptom of Crohn's!

Having bowel movements with Crohn's is, well it's just plain unpredictable. I usually have at least 2 daily that are "porridge". Sometimes that's all - just 2 porridge, and that my friend is a good day.

It's the others, or lack thereof, that are more worrisome. Sometimes I get blood in my stool. It's not a lot, but it's little "strands" that mix in and wrap around formed pieces. Some days I get big chunks of muscous mixed in which looks and smells awful. It lloks like some organ inside is falling apart and coming out in your bowel movement.

Ive had formed poops, but that is rare, and they usually fall apart as I'm looking at them. I've seen stuff in that toilet that looks alive, some things that look like insects, stools that have holes through them like swiss cheese.

WIth Crohn's disease, your bowels will do things, and have things come out of them that are very scary.

It's good to take your tests. Also to find a good Gastroenterologist (GI Doctor) who knows more than regular doctors about your digestive system. Others have mentioned "low residue" diets that help slow your bowel movements - those have worked for me when I'm having bad days.

The big thing to look out for is blood - lots of red pooling blood is bad. If it turns the water red in your toilet. Then you probably need to go to an emergency room. Also, if you are having a lot of poops and diarrhea, then you need to drink at least .25 litre (8-ounces) of water EACH HOUR so you don't get dehydrated.

Also like everyone else said, STRESS makes this worse. I don't know what to say to make stress go away - it's not easy. Stress makes Crohn's disease worse.

People with Crohn's disease are supposed to avoid things high in sugar, avoid smoking cigarettes, and avoid using Non-steroidal Anti-inflammatory drugs (NSAID) such as asprin, ibuprofen, or naproxen. Tylenol is safer for Crohn's patients to use.

 

[foxiemissk]

Hi Henry! Not knowing what is going on is certainly devastatingly scary! I didn't know for years what was happening with my body. I have Crohn's and some of my most common symptoms are nausea, vomiting, and liquid diarrhea. Once they figure out what exactly is causing your fistula, you will at least have one answer to put your finger on. I hope your surgery goes well. As for the colonsocopy, I was scared to death the first time I had to get one. My doc medicated me so I would relax, and I understand most people sleep through it. I was a little sore the next day, but they had to take biospies. My father is never bothered by them, and he gets them every few years. In my opinion, the worst part is the bowel regiment you have to follow to "clean" yourself out ahead of time. Its overwhelming for me still, and I do it quite frequently. I wish you the best & I'm happy to go into detail on any of my symptoms or procedures if you want more information!

Good luck!