Waiting for diagnosis - feeling so depressed - HELP!

[Weeze2]

Hello
I'm totally new to all this, but my family wanted me to look for help on IBD forums as none of us have any experience of anything like this.
Brief background: October 2011 had my appendix removed, was only told 2 weeks ago that I never even had appendicitis and it was the same as whatever is wrong now. I was in hospital 2weeks ago with very severe cramping pain in lower right side, and I've had constant diarrhea for over 2 months, with some bleeding. I have been told it is probably Crohn's and I've been put on Budesonide until I have a colonoscopy.

Being honest I feel like me whole life has come crashing down around me. I feel so totally shocked and depressed by thoughts of what might be wrong and by what the future might hold. I have a wonderful boyfriend, a lovely house and a great full time job, but I feel like I'm going to lose all of this if I have Crohn's. I have so many questions about my future that no one can answer but it's making me so miserable. My partner is trying to be supportive but even he is finding it hard to keep positive.

Does anyone else feel like this? Will I always feel like this? If anyone can offer any help, advice or words of experience, I would be so grateful.

Thanks, I've never joined a forum before so I'm not sure how all this works!

 

[guest78]

Hey!
Im so sorry you are feeling so rubbish. This forum is great for talking to people who suffer from the same condition. It is such a great support network.
Please do not think that Crohn's will make you lose everything you have. I have had Crohn's since I was 16 and have completed GCSES, A levels and half way through Uni, I have the most wonderful boyfriend and family. If anything, I think it brings you closer to the people you love and definitely makes you a much stronger person.
I do however, completely understand what you mean. It is terrifying, especially when you don't have all the answers you want. I feel like this sometimes and it is completely normal. A lot of people Crohn's struggle with the psychological aspect of the disease and I know many people who have had counselling or anti-depressents, myself included. It is a big deal and it is scary. However, it is not the end of your life, and you will get your head around it. I no longer feel like Crohn's defines me.
If you have any questions please so message me, Id be more than happy to answer any! I also have a blog where I talk about my experiences and how Im feeling. http://giftofthegab1.blogspot.co.uk/
Please do know that you are not alone and it will be okay
xxxxxx

 

[Weeze2]

Thank you so much for replying, it is good to know that the things that are going through my head are normal! It's such a relief to know there are nice people out there who understand.
I think it's the total lack of control over my own life that really scares me, and that eventually my boyfriend and my family are going to get fed up of helping me. All I can see is that this could get so much worse, and that they're not going to stick around. They are not horrible people (quite the opposite) but surely everyone reaches a point where enough is enough? I have been with my boyfriend nearly 3 years and we have been talking about getting married and having children....but why would he want to be with someone who might never be well? I know I probably sound crazy but these are the thoughts that go round my head when I lie awake in bed at night!!
I am a full time shop manager and I hate not being in control of things, and I'm scared of never knowing if I'm going to have a flare up or something...I like to plan my life and none of this was in our plan! And working in a busy clothes shop isn't an ideal place when you have stomach cramps, bloating, diarrhea and feel totally shattered all the time. I'm on my feet for 9 hours a day, and at the moment my staff are being great, but they might get sick of covering for me and letting me sit down all the time.

Does any of this make sense?

 

[guest78]

I can 100% relate to the control thing. that is my biggest issue with having Crohn's; that no matter what you do not have control of what your body does and what happens. That has always been my biggest battle.
I think they key is to be completely honest with your boyfriend. Include him and help him understand. & when you have good days and good times to make the absolute best of them. Live life to the full. I think people get more fed up with peoples attitude rather than the disease. If you keep your chin up and remain positive I think people happily stick around. & your boyfriend loves you! and just because you now have crohns doesnt mean he'll give up. it helped me to think that if things were the other way round, would i give up on him, and i wouldnt.
people spend years in remission so there is no reason why you wouldnt. things can be kept in control and you will be well.
normally flares creep up on you, it is tough but i always have warning signs rather than a sudden feeling of people un well. nobody would wish to have this disease but it is manageable.
I am studying fashion and crohns does not fit in with such an un-glamerous disease! but there is no reason why you or i cant make it work. i know it is really hard, and such a life style adjustment and you are only at the start of getting your head around things.
everything you have said makes perfect sense and i think everyone goes through a period of time when they think the same.
but please try not to worry about other people, (that seems to be your main worry) in 6 years of crohns, countless jobs, uni, school, internships, family, friends and boyfriend i have met very few people who were not understanding and lovely about the disease. and those people that werent, werent worth having around anyway
xxx

 

[Honey]

Hi there,
You will find this forum helpful to express your feelings ,as dealing with a new diagnosis brings them out. I too was recently diagnosed with Crohns and am now on Infliximab infusions as Meds made me sicker. It is scary and natural to feel upset. Do not worry: once they find the treatment that suits you, you will feel a lot happier. All those changes are difficult, take one day at a time!! I hope you have a good Consultant as I have. It helps to meet a doctor who will listen to your concerns and explain every treatment, step by step. Best wishes, let me know how you are doing.

 

[dannysmom]

Hi and welcome. There are lots of treatments for Crohn's ... and I am glad to see diagnosed members are supporting you. Please keep us posted.

 

[Weeze2]

Thank you everybody, it really is amazing to find somewhere I can be honest about things are going, and know that everyone will understand.
My current situation is that I'm on a waiting list for a colonoscopy (which I am also scared of as I've never had anything done like that before) and I'm seeing my gastro Dr for the first time since I was in hospital in about 4 weeks time. I feel like I'm in limbo till then, and I'm getting more and more anxious as time goes on. I am quite nervous about meeting this Dr again as he was quite dismissive and abrupt before, but I'm hoping he will be ok this time. I am in constant pain (in the area where my appendix used to be!) and I have pretty much lost my appetite. My boyfriend makes me eat to keep my strength up, but I really don't want to, as I am in more pain if I eat more than a very small portion. I have constant bloating and diarrhea and I am always totally shattered, even if I manage to get a full nights sleep.
Does anyone have any advice of what questions to ask the Dr when I see him? Also, as I've already been prescribed steroids and a hefty load of painkillers (they even gave me a bottle of morphine!!) if I get a lot worse before my appointment in june should I bother going back to my GP or to the hospital? As I've already got a load if medication is there any point in going back? It's just last night the cramping pain got so bad my boyfriend wanted to call an ambulance and I told him not to. Also, my family are not happy that I've got to wait for so long for a colonoscopy, as when I was in hospital 2 weeks ago, they made out like it was a real emergency and that I needed to be seen within 2 weeks of leaving. When I rang the endoscopy department last week they just said "you shouldn't have been told that, on your file it just says routine, nothing about it being an emergency, so you're just going to have to wait at least 6 weeks"!!! Is there anything I can do about this?

Thank you for any advice anyone can give.

 

[guest78]

Hi!
Try not to worry about the colonoscopy you'll be sedated so will probably not know what's going on at all.
If pain continues i would definitely go back to your Dr. You shouldn't have to put up with it and they need to be kept updated. I would also tell your gastro when you see them. They may up your pain meds or something so it's always worth seeing someone. I try to look at it as they are the Drs and it is their job to help me and work out what to so, so I shouldn't try to second guess and diagnose and treat myself on my own. The wait for tests can be ridiculous. I've been waiting for 4 weeks now to meet a surgeon. And I waited 3 weeks for my colonoscopy. Unfortunately that's often the way with NHS.
X

 

[Honey]

Hi there,
It is not long now until June when you will have your colonoscopy. Steroids should kick in and make you feel better; I know, I am at my best just now on steroids. They give you the feel good factor even though you are not well. They can also reduce the inflammation which is the cause of the pain. Eat small amounts frequently to keep your strength up. Filling the tummy can cause you pain and bloating! Drink plenty too. You will have preparation medicine to drink before your examination. A tip, put some Roses lime juice in the solution you make up to drink. It makes it more palateable! You may be told a little of the results by the doctor, after the colonoscopy. Do not worry, take one day at a time. Ask your questions at your next visit to your doctor or Consultant. Just listen to what is said and speak your mind, asking what treatment, diet etc. I have Crohns and although it has nothing to do with what I eat, I do know certain foods can make me worse viz, creamy rich or cheesy sauces. I hope I have not tired you with this long answer. Thinking of you.:bigwave:

 

[Hbear21]

Hi there,

I am still undiagnosed as well, but I wanted to comment that I also had my appendix out, thinking that was the source of my problems. This was back in December, so things have been moving a little more quickly for me, but I am still muddling through the diagnosis process. I have had a colonoscopy, endoscopy, flex sig, etc... but nothing has been conclusive. The colonoscopy really isn't that bad--the prep is no fun, but the actual procedure is just like taking a nap! I can definitely relate to a lot of what you are experiencing--I am only a year out of undergrad and am engaged to my partner. I have been unable to work since December and spend most of my days in bed. I worry about putting so much strain on my relationship and my partner--you are definitely not alone! Please feel free to get in touch with me if you need someone to commiserate with. I hope that things get better for you soon--just keep hanging in!

 

[Weeze2]

Thank you, I really can't explain how reassuring it has been to know there are people who understand. Just reading these comments helped to calm me down....then I got my letter/parcel in the post telling me I've got my colonoscopy on the 14th, and all my feelings of anxiety and fear have come flooding back. I know it's a routine procedure and that it's for the best, but it doesn't help me feel any better!! Does anyone have any tips on making that drink stuff more bearable? Any general advice from anyone how has had one if these? I am also almost phobic of being in hospital and I totally freak out until I'm given strong enough drugs to stop me, how much sedation will they give me? Is it worth me ringing them the day before to explain how scared I am? Will it make any difference? Would my partner be allowed in there with me to hold my hand? (I'm in the uk...do they allow that in the Nhs?)

 

[guest78]

Hi!
I had a colonoscopy a few weeks ago. Chill the made up prep in the fridge for a few hours, it goes down a lot better when cold I found I worked best to drink it with straws sat towards the back of my throat. I downed a glass at a time as quick as possible whilst holding my nose - straight down my throat not filling my mouth. Once the glass was done I took a swig of lucozade. Sorry if that's too detailed but I found it really worked!
I was terrified of my colonoscopy. So don't worry they are very geared up to scared people and are always so lovely. I wasn't allowed my boyfriend or mum in hut I have always had a nurse there pretty much just to make sure I was okay and hold my hand. For one of mine it was done under heavy sedation and I barely remember anything anyway! Do don't worry. Due to a perianal flare the next was done under general anaesthetic so I was completely knocked out.
Do you have any other questions I'm more than happy to help!!
Xxx

 

[Hbear21]

My advice for the prep drink is to keep some hard candy, like life savers, around to suck on after drinking, or even during. It really helps take the yucky flavor away. Also, taste it before adding any flavoring powder, if you go that route. I added Crystal Light to mine before trying it and the flavor actually made it worse, so for the second batch I just drank it straight. Another colonoscopy prep tip is to keep baby wipes handy. Much gentler than toilet paper after awhile! Other than that, just have some fun books or dvds around to distract you and it will be over before you know it!

 

[Cricketnut]

Hi

It's very natural to be worried about having a Colonoscopy - I've had several and I can honestly say that it's not that bad. The drink is the worse part. I mostly sleep through the actual procedure due to the sedatives - best sleep I've had for ages.

I had a couple of years feeling very poorly, the 1st year of which it took the consultants to diagnose Crohn's, eventually the meds started to take effect and I've been relatively trouble free for a couple of years - so don't despair.

 

[723crossroads]

I agree with cricketnut. The hardest part is the day before drinking the prep and getting cleaned out. Last time they let me use two bottles of quart sized Gatorade and a bottle of Miralax mixed in. It went down much easier than the "Go lightly" they gave me before. I got Lemon flavored and it tasted like lemonade. The test itself was nothing. They gave me a sedative and I slept the whole time and didn't feel a thing afterwards.:ghug:

 

[Weeze2]

Hello, I'm only 3 days away from starting my prep for my colonoscopy and im getting so nervous. I just wanted to ask a few questions....if anyone could help it would be great!
- how long did it take for you to recover? I've got 2 days off work afterwards (I work full time in a busy clothes shop so it's not really appropriate if you're feeling bad or need the loo). Everyone at work is being very considerate and keep saying if I need more time afterwards then to let them know....will I need more than 2 days to feel better?
- I have been prescribed Budesonide for the last 6 weeks, and it has really helped the pain calm down and my bowl movements have been less frequent and less painful. But because I've been taking these will it affect the results of my colonoscopy? Could it give a false negative as it might look like there is no inflamation? I am still in pain and discomfort but nowhere near as much as before.
- when I had my appendix removed before, I had a severe allergic reaction to the anaesthetic (was in surgery for 6 hours, had to be woken up half way through until blood pressure went back up) I am now really worried about being sedated for my colonoscopy on Friday. I want to be fully out for the count when I have it done, but I'm worried about something going wrong, should I call the endoscopy the day before to discuss this? Is there any point?

I am getting so nervous about this, thank you to those of you who have already replied. All your kind words really help

 

[Cricketnut]

Hello, I'm only 3 days away from starting my prep for my colonoscopy and im getting so nervous. I just wanted to ask a few questions....if anyone could help it would be great!
- how long did it take for you to recover? I've got 2 days off work afterwards (I work full time in a busy clothes shop so it's not really appropriate if you're feeling bad or need the loo). Everyone at work is being very considerate and keep saying if I need more time afterwards then to let them know....will I need more than 2 days to feel better?
- I have been prescribed Budesonide for the last 6 weeks, and it has really helped the pain calm down and my bowl movements have been less frequent and less painful. But because I've been taking these will it affect the results of my colonoscopy? Could it give a false negative as it might look like there is no inflamation? I am still in pain and discomfort but nowhere near as much as before.
- when I had my appendix removed before, I had a severe allergic reaction to the anaesthetic (was in surgery for 6 hours, had to be woken up half way through until blood pressure went back up) I am now really worried about being sedated for my colonoscopy on Friday. I want to be fully out for the count when I have it done, but I'm worried about something going wrong, should I call the endoscopy the day before to discuss this? Is there any point?

I am getting so nervous about this, thank you to those of you who have already replied. All your kind words really help

Seriously, it isn't anywhere near as bad as you fear. And you'll feel fine within an hour fo the procedure, if not sooner. Albeit you can't operate machinery/drive due to the sedative.

I've had several colonoscopies and I slept through them all - bit groggy for a few minutes after waking up but perfectly ok by the time I got home.

Take a sandwich with you, you'll be starving when it's over. Having been totally cleaned out, you might even feel quite good - I did.

The worse part is the prep, the drink it pretty foul (you can flavour it though) and then you'll be on and off the Loo - but, to a Crohn's sufferer, that's nothing new !!

Don't worry about it - you'll be fine.

edit - it's a sedative rather than an aneathestic - so you should be fine - but give them a call anyway just to set your mind at rest and be doubly sure - they will want to know this information.

 

[Cricketnut]

Oh - and I wouldn't worry about getting a false negative. I think it is quite common for sufferers to have had some medication to alleviate symptons while they wait for their colonoscopy - I had a course of steroids. They will be able to see any scar tissue if areas have healed - but it sounds like you're still having some pain, so there'll definitely be something to see if it's caused by Crohns.

They know what they're doing.

 

[Lenatilde]

Hey there.

We are going through similar things. I have my first GI appt on 14th, too, and have been waiting for weeks - freaking myself, and my husband, out

Sending you big hugs - it'll all be a-ok. Xx
xLT

 

[Cricketnut]

Good luck to both of you.

One of the problems is that; because you're feeling ill, you are not at your best to cope with the added stress and fear of these procedures. It's a bit of a Catch 22 situation.

It's good that you have family/partners to support you. Times like those, you really start to understand just how important their support and understanding is.

My wife was brilliant and really helped to keep me calm.

But you needn't worry, honestly.

 

[anniegetyoursax]

The prep was pretty bad for me because I was very irritated inside. Couple of tips, drink A LOT of fluids like Gatorade but not the kind with brominated veg oil (a flame retardant). Maybe they don't allow it put in Gatorade in the UK. It will say on label. Also, use petroleum jelly BEFORE the prep kicks in and reapply to prevent irritation. Make sure all your liquids are CLEAR (some chicken broth and apple juice is not) and have a project or distraction in your bathroom because you will be in there A LOT. I set up a little office! I was also awake most of the night before, so I think two days off afterwards is a good idea. The sedation I had was Propathol, (the Michael Jackson drug). No wonder he got addicted, that stuff is GREAT! I woke up with a smile! I was exhausted tho. I have some soreness inside but I am getting better every day. You also won't be able to lift anything heavy for a week afterwards so make sure you have someone help you in your store if you do lifting! Saying a prayer for you and your correct diagnosis!

 

[dannysmom]

My son had some pain for 1 day after his last scopes ... they took a lot of biopsies in an attempt to try and determine a dx.

I would recommend finding out exactly what medication you are allergic to. Even if you donot need it this time, it is important that you know as there are different meds used for general anesthesia.

good luck!! Hope you get some answers.