awaiting diagnosis, feeling pretty scared though :(

[joshludlow]

Hi guys im new to this forum, and I'll just cut to the chase. For the past 8 months I had been suffering with bad stomach pains and cramping whilst having blood and blood lumps in my stool. After being messed around and forgot about repeatedly by the hospital I actually got a flexible sigmoidoscopy. I was given a preliminary diagnosis of crohns disease and they took 6 biopsys samples that I'm currently waiting for (its been two weeks noe so I'm chasing it up on Monday) the results. I'm on Pentasa 500mg x 4 daily. Nothing has been explained to me at all and I'm pretty much in pain after every time that I eat which for me is pretty scary. I'm 19 with a baby on the way and I just want some support from people who are going through it so I'm at ease and able to enjoy the upcoming excitement. Thanks guys.

 

[SarahBear]

Welcome, and congrats on the incoming little one.

So they've already decided it's probably Crohn's? Are you seeing a gastroenterologist, or just going to the hospital? Do you happen to know if they have any plans to change your medication after they get a more definite diagnosis?

When you say that nothing has been explained, do you mean that you're unsure of what Crohn's disease is, or just that you're not really sure what treatments your doctor is planning for you?

 

[joshludlow]

thanks for replying to me Sarah I really appreciate it. They actually have out question marks over my paperwork as after the sigmoidoscopy he said it was a bit of a mess up there, its no where near my rectum its pretty far up. I'm seeing a gastroenterologist, he hasn't helped so much as of yet. On the subject o plans on what to do, they haven't told me anything. They said 'here's pentasa take this it may help while I wait for my biopsy to come back' and it hasnt, as of yet (apart from make my hair fall out).

As for explanations of crohns I've had to just do my own research but I don't have the fondest idea of how to even begin dealing with it, if its this that I have.

 

[motheroftwins]

Hi joshludlow, welcome to the forum. Sounds like your going through a lot right now. When is your next GI appointment and when was your last colonoscopy done? Hopefully you'll get the biopsy report soon and an explanation. The whole waiting game is the worst.

 

[SarahBear]

It sounds like they're giving you Pentasa just for now, because it can help and is fairly gentle with few side effects. However, it typically takes a few months to start working. It's making your hair fall out?! That's kind of strange. I haven't heard of that side effect. Are you taking any steroids or anything else? Have you had your vitamin levels checked? Low vitamins might could make your hair fall out.

Well, you basically deal with it as it comes. Your doctor will give you medication, and if it doesn't help (or help as well as you'd like), you tell them and they'll typically try something else. You might want to keep and eye on vitamin levels, and take a multi-vitamin if you're not already. You might also want to make some dietary changes. Have you noticed anything you eat makes you feel worse? It may or may not. Have you been unusually fatigued, or experiencing any other symptoms? Has your sickness been interfering with your daily life?

 

[joshludlow]

My last colonoscopy was done, erm, never? I had a flexible sigmoidoscopy done that went up a bit further than usual. That was two and a half weeks ago.

I'm not taking any steroids but I have noticed hair falling out a lot. I've never had my vitamin levels checked and I don't take vitamin tablets (yet! Sounds like il have to start). I take citalopram daily for depression and anxiety but it has never affected me.

I've noticed things such as fast food really mess me up but I don't eat it all the time.

Thanks by the way, I just wanna get to the bottom of things (pardon the pun).

 

[joshludlow]

And yes, I had to quit two jobs so I'd say its affecting me pretty bad

 

[SarahBear]

Hmm. I don't really know anything about a flexible sigmoidoscopy (I've only had colonoscopies) but it is my understanding that a sigmoidoscopy doesn't go as far as a colonoscopy. Am I right? I'm assuming that they saw what they needed to see, though. Did anyone mention having a colonoscopy, endoscopy, or capsule endoscopy done, as well?

I'd suggest you do start taking some vitamins - it might really help with the hair loss. Do you have any other questions? I might not be able to answer them, but if you go ahead and post them, someone else with more information might come along.

 

[joshludlow]

A sigmoidoscopy only goes around about 2/3rds of your large intestines. Nobody has said anything really I have literally been left in the grey about it all until I have this meeting again when I hopefully get the full diagnosis. And I'm going to definitely take vitamins, after all I am only 19 with a lovely luscious head of hair haha. Thanks for your kindness and a support, I have one last question for you which is: Do colonoscopies hurt? Are they just very uncomfortable? Or was you knocked out for it? Thanks

 

[SarahBear]

I was out for both of mine! If you're nervous about it, you can request to be asleep and it shouldn't be a problem. Do you have medical insurance?

 

[joshludlow]

Oh okay and I'm in England, it's all free over here I don't have to pay anything.

 

[SarahBear]

That's convenient! If cost is no issue then it certainly shouldn't be a problem for them to let you sleep through it. Although I could be wrong, since our health care systems are different.

Hoping you find answers (and feel better) soon!

 

[joshludlow]

As they say, the best things in life are free! haha.

Well thanks so much for your help, it's really appreciated.

 

[KayleighMeek]

Hi,
Hope you get some answers soon. Just wanted to say if you had a flexible sigmoidoscopy a colonoscopy will be easier as they give you a mixture of drugs so you don't really feel anything. I found the sigmoidoscopy alot more uncomfortable. Good luck x

 

[Sascot]

Hi, not sure about England, but the chances of getting an anaesthetic for any colonoscopies/endoscopies is pretty rare in Scotland -the bad part of getting "free" treatment is that the hospitals are reluctant to spend the money on the staff and monitoring required for general anaesthetics. However if you make sure they know you are really nervous about it, they would probably give you some sedation. I had a colonoscopy but the sedation only worked after - couldn't remember the trip back to my room - lol . However even though I was mostly awake it was more uncomfortable than painful apart from one area.

 

[DaniP]

Hi Josh,

I too am from the UK, things are a little different over here to the US.

Firsrty, I wanted to say I know its hard right now not being 100% certain and not being on correct drugs. I like you had symptoms for about 8 months before I was diagnosed and it was HELL!! I had a colonoscopy and the nurse said straight away "it looks like crohns" and shes brilliant. That day they gave me a course of steroids and I felt better in a day! Although there were side effects, mood swings and weight gain but it stopped my crohns problems.

I too was given pentasa initially but had to stop them after a day or two because of server migraines, I then was put on Mezavant and I've been on it ever since (3 years) with no crohns pains etc! I now live a normal life and forget that I even have it! So its not all doom and gloom, once they get you sorted you like me may be symptom free, so try and remember, just a few more weeks and you may be much better.

Also, the colonoscopy I had the first time round only went half way round my colon and it was very uncomfortable, they dont put you out for it over here, they dont give you any sort of drugs either. Second time, I had the full one that goes right around the colon and that time they will give you gas and air which worked a treat for me and I didnt really feel anything.

Good luck!!

 

[joshludlow]

Thanks so much guys, I have been out at ease a lot from just hearing it all from you all, knowing I'm not alone anymore.

As for the results, I have been told after calling the hospital that I should receive the results within the week which is excellent news.

And to all of you that have said about sedation, I can request it or I can request gas and air, so thanks to all of you that mentioned it.
Il let you all know what diagnosis I get cheers.