Hello!!! Newbie, scared,unsure....depressed

[ontariomom]

Hi all

I was searching for a Crohns board and this was the first one that came up in my search. After lurking for a bit this morning i thought that hey! These people understand!!!


I am having a bad day today and needed to find some support somewhere.

all doctors i hve seen have told me i am a complex case. which does nothing to reassure me.

I have seen one surgical specialist and he has just recently refered me to a Gastro Specialist.

I am waiting on that appt. I have no treatment yet, i have two fistulas. And not even an official dianogsis, even though every dr has told me it Crohns they wont confirm, i have to have the GI dr do that.

So i am stuck . I dont know what to do. I am in pain of some sort everyday. I can only treat it with what i can. I am lost. I am scared. And i feel totally alone.

Its been a year and half. Ihave quit work , as i ran a home childcare and having diahreea 10 times a day , and bowel movements that last 30 min cause safety issues when caring for small children.

Yes i know i am depressed and have refused treatment for it. I really feel that if i get a proper dianogsis and start treatment it will help.

I am tired of not having anyone who understands how i feel. Tired of being told you will be fine, or cheer up or.....other countless things.

I am just plain tired.

Wow that wasnt a very cheerful intro was it!

 

[Jennifer]

I'm not really sure how many intros are actually cheerful. Its ok, don't worry about it. Welcome to the forum!

I'm VERY surprised that all the previous doctors simply said that you need a GI but didn't refer you to one. That simply boggles my mind. At least one person listened and started you on the right path. When is your appointment? Any chance of getting a sooner appointment by calling the office and letting them know how bad things are and how its not only affecting your health as the days go by but your mental well being as well? Who knows they may get you in sooner. Most docs usually leave room for patients with emergencies. I'd call fistulas emergencies. Do you know what type they are?

There are meds out there that can help close the fistulas without surgery so hopefully you're one of the lucky ones who can treat them with just medication. I know there are members on the forum who are currently using meds for their fistulas. Maybe check out the fistula subforum here: http://www.crohnsforum.com/forumdisplay.php?f=76

As far as the depression goes, yes a diagnosis and treatment will more than likely help but it can be a long road to diagnosis so even if you don't want to treat your depression with medication you can still try and see a psychologist/therapist for the depression. They do help even if its simply someone to talk to. I've seen a few in my day and with the right one (not all are the best ) they can be very helpful and can give you peace of mind while you go through the diagnosis process and even after a diagnosis.

Take heart in knowing that you will get a diagnosis (dunno when, there's lots of testing along the way) and will get the proper treatment you need and that you're in the right place for the right kind of support. Everyone here wants nothing more than to help everyone else.

When you see your GI and they run blood work, ask them to check all your vitamin levels as well because when you're low in certain ones it can make you feel tired and dizzy etc. like being low on Iron, B12, Vit. D, Zinc etc. Feeling tired can make you both sad and irritable. Just an FYI.

 

[ontariomom]

I guess i should have also said:

I hace had a colonscopy,endoscopy,MRI,Small bowel through and lots of blood work. BUT the problem was that when the did the scopes last year they showed nothing. So chances are the GI will want to redo the colonscopy.

I know my iron is a little low but not low enough they wont to give me supplements. I have had alot tested cause my NP figures i am also going through perimenopause. Although i often wonder if those symptoms are due to the Crohns?????

Its all so confusing at times.

As far as type of fistula....they are both draining beside my anus....not sure. I am still very new at all this. Only last week that the colorectal surgeon told me it was Crohns.....even though it was suspected for the last 6 mos or so......

I am worried about taking meds for depression. I understand they are difficult to stop taking and i just dont want to create more problmes. But.....i also cant have days like today often or i dont know what i will do. Laying in bed crying for the whole day....i only do that a couple times a month. I promised my NP i would come back if it became more.

Its everything. With me not working, financially we are in trouble. And that just adds to it all. I try not to stress about anything but ...well its hard.

thanks for all the suggestions!!!! I will look into finding someone to talk to.......

Perhaps that is what the dr was talking about. The meds could close my fistulas. THAT would be wonderful.

I just wanna say OMG you have been in remission for 13 years??? that gives me hope. congrats!!!!

 

[David]

Hi there and welcome to the forum. Various things:

1. Do you have a GI appointment yet or are you still waiting for it to be scheduled?
2. Look into enteral nutrition. If you have some form of IBD, it's something that may begin to help you NOW.
3. As Crabby said, get your vitamin and mineral levels tested. Get that done now if you can. Especially vitamin B12 and D. If you have Crohn's Disease, chances are you are deficient in one or both of them. And either can lead to feelings of depression as a symptom of depression.

You may also want to check out our undiagnosed club.

We're here fore you.

*hugs*

 

[Jennifer]

Even being low in iron can make you feel they symptoms of a deficiency. Mine was low too so my doc suggested I take 325mg (usually the pharmacy keeps that behind the counter but you don't need a prescription for it). One pill didn't do anything after they checked my blood work again so now I take two of those so I'm at 650mg/day. Haven't had the blood work done yet to see if that's done anything either. Infusions are always a possibility even if you're in the low range and you and your doctor feel its affecting you negatively (being tired all the time etc.).

 

[Robert747]

Wow that wasnt a very cheerful intro was it!

But what really impresses my after my short time as a member here is the positive force generated by sharing things with others and the good humour that keeps us all sane.

All the best

 

[ontariomom]

Hi there and welcome to the forum. Various things:

1. Do you have a GI appointment yet or are you still waiting for it to be scheduled?
2. Look into enteral nutrition. If you have some form of IBD, it's something that may begin to help you NOW.
3. As Crabby said, get your vitamin and mineral levels tested. Get that done now if you can. Especially vitamin B12 and D. If you have Crohn's Disease, chances are you are deficient in one or both of them. And either can lead to feelings of depression as a symptom of depression.

You may also want to check out our undiagnosed club.

We're here fore you.


*hugs*

I just got my referral last week to the GI from my colorectal surgeon. So i am still waiting. My NP told me to only wait a couple of weeks for any appt and then go see her and she would push me in. So that is my plan.

I will get everything tested. All this is so new to me.

One thing i wondered, could it be Crohns symptoms that are the same as perimenopausal symptoms? Can Crohns mess with my mentstrual cycle? Or am i really dealing with both right now???? Does anyone know?

I have symptoms such as heavy bleeding to no bleeding back to bleeding, 2 weeks of cramps so bad.....major PMS (emotional), hot flashes.....etc

 

[marjaw]

I was going through perimenopause most likely at the same time as having Crohn's (but not diagnosed). When the GI started asking about hot flashes, night sweats insomnia related to Crohn's I was stunned. I thought it was all menopause. And you know it could have been either, both or a combo of the two. Who the heck knows. I'm through menopause (went my year without a period) but still have hot flashes, night sweats and insomnia. I don't think Crohn's messes with your periods but the stress of dignosois doesn't help. Hope you start to feel better soon.

 

[marjaw]

Forgot to mention....perimenopause probably isn't helping with the depression either. Damn hormones :-(

 

[Jennifer]

I know that some people have mentioned their period being affected (go for months without one or its spotty etc.) by a flare. When your body isn't up to snuff so to speak physically it can definitely affect your menstrual cycle. Really the answer is, I dunno if its Crohn's or perimenopause or a combination of both. When the flare gets under control, you'll know for sure.

 

[legardored2]

Welcome to the forum. I was diagnosed with Crohn's in January this year after a year of tests and a stint in hospital. It was a long road but I did eventually get my diagnosis and so will you you just have to keep pushing your doctors and refuse to be fobbed off or told no. Crohn's has affected my periods it is very rarely now that I get my period on time and when I do get them they are very heavy, then stop, then I spot and then it starts again. I also suffer from depression amongst other mental health issues and the Crohn's defiantly makes me feel very low. Anti-depressants can be addictive depending on which ones you take and it can take a long time to find the right one for you, however if managed properly it is fairly easy to come off of anti-depressants and when you find the right one they can really help lift your mood and help you get through the day with out feeling like a zombie. I have been on at least 11 different anti-depressants before I found the one that worked for me. I stopped taking my anti-depressants about 9 months a go as my husband and I wanted to try for our second baby but my health has unfortunately got worse and my periods have become more irregular so we have decided to stop trying for the time being and as a result of another stay in hospital recently and ill health I have become depressed again so am back on the anti-depressants. A therapist is definitely an option if you don't want to take medication and can be very helpful for support and just having someone to talk to who isn't directly involved. I really hope things improve you soon and remember you are not on your own. Every person on this forum can relate to what you are going through in some way or another and we are all here to support each other.
Best wishes.
Leg xxx

 

[ComaGirl]

My advice, from someone who used to work in doctor's offices: find out where your gastro has hospital privileges. Call the hospital switchboard and ask who the on call Gastro is in the ER. They have schedules. If he is on call as the gastro for the ER before your appointment, go to the ER while he is there when your pain hits! Explain that he is your gastro, but you haven't seen him yet.
The being tired and living in the bathroom thing is certainly depressing and as you get a handle on it you will feel much better. I am stubborn about this. I refused to admit everything I was going through was getting to me. I hit my low point, wallowed in self pity for a day or two and then got back up. My Crohn's went undiagnosed for 25 years. Long story. A wise friend of mine said I needed to take each of those experiences of my life that would have been different had I known and treated the Crohn's properly at that time, and grieve it. Things like friends in college making fun of my bloat at times and me not knowing why it happened. Once I made peace with 25 years of mysteries and frustrations, it got better. The fact that I now know what I'm facing and getting the help I need is certainly a plus, but it was a journey to get to the plus side of the equation. It can happen for you, but it is a process and you have to go through every step, even the hitting bottom. Like I told my son when I was teaching him to swim - it's okay if you go under, just make sure you always come back up!