New to Crohn's.... many questions

[ALI_101]

Ok, after my colonoscopy/pathology results showed that i have inflamation and lesions in the final part of my small intestine and anus, coupled with all of my symptoms, my gastroenterolgist feels quite sure i have Crohn's, though will not give a final diagnosis until one year from now when another colonoscopy is to be performed. So, as it stands, i'm on the 'possible' Crohn's list but i am being treated as if i have Crohn's.

I have a ton of questions, in no particular order:

*Pains: i've never had a flare or suffered any very serious pain. Mostly, I experience strange pangs, twinges, odd sensations, in many different parts of my abdomen, not very painful, mostly mild but occasionaly reaching mild to moderate, and only momentery for a second or more. Some days i feel nothing, other days this happens regularly. Outside of a flare, what does your average Crohn's patient feel from day to day. Does someone in remision feel 100% normal, no odd feelings in the abdomen etc, or is the odd pang, twinge etc par for the course for all Crohn's sufferers. Hopefully someone can make sense of that lol.

*Alcohol: I've never been a regular drinker, but approximately twice a month i like to have a good drink with my friends. I'm soon to be taking just pentasa, oral tablet form and suppositry form. Can i safely drink alcohol with this drug? if yes, do i need to keep it in moderation, would it be foolish to drink to excess, getting legless so to speak? I dont have the strongest head for alcohol and often end up that way on my nights out.

*Work: if, or when, i get officially diagnosed, am i legally obligated to inform my employer, or is this a personal choice?

*Sex drive: this is not an easy subject to talk about, and possibly women reading this might be put off this thread, but i need answers and have nowhere else to go. I'm a married man and my wife, over the last year, has noticed a big decline in my sex drive, and so have i to be honest. I very rarely feel like having sex (or masterbation, only mentioning that one incase some have doubts the problem may be in the relationship, its not). I'm still relatively young, early thirties, and until a year or so ago was used to waking up with an erection, or getting a stir down below very regularly. Today, that seems to have pretty much gone from my life. Yes, i still have a feeling for it a couple of times a month, but its never a very intense desire like it once was. A massive change has occured and i'm very worried about it. What can anyone tell me about Crohn's affecting someone's sex drive, is it at all possible?

That will do for now, i'll come back with some other questions later. I'd be grateful for any advice anyone cares to give, thanks in advance.

Regards
Ali

 

[Crohn's 35]

Welcome Ali! Hmmmm you have to wait a year for diagnosis? Did I read that right? That is the most strangest thing I have heard on the forum. Unless I read it wrong but read it 3 times. A colonscopy can be seen and told of the disease many times right after and a follow up from a biopsy. Pentasa is a pretty safe to have a few drinks. But as a general rule alcohol can aggrivate the disease. As for sex drives I am female so can't speak from your point of view but others males may come on and comment. Mostly the sex drive can be lowered because of anxiety and the disease itself. Glad you joined us. What country are you from?

 

[Cat-a-Tonic]

Hi Ali and welcome. I agree with Pen, that is very odd that they'd make you wait a full year before you get a definitive diagnosis. If I were you, I might get a second opinion from another doctor - it is not the norm to have to wait a full year after a positive colonoscopy! They should have either diagnosed you right away, or if the scope was unclear, they should have ordered more tests (such as CT scan, MRI, pill cam, barium swallow/barium enema, flex sigmoidoscopy, etc).

As for your questions, we are all different in terms of pretty much everything you've asked about. Some of us experience terrible pain and some of us experience minimal pain. Some experience diarrhea, others constipation, and a few don't have any changes in bowel habits. Some bleed, others don't. There is no "normal" when it comes to these types of illnesses. You're just going to have to do some trial-and-error and figure out what your "new normal" is - that goes for alcohol as well as food and physical activity (some of us find that if we overdo things and do too much, it causes us more pain & symptoms). As far as sex drive is concerned, I'm also a female like Pen so I also can't comment, but hopefully some guys will find this thread soon and help you out more with that one.

 

[ALI_101]

Thanks.

My gastroenterologist said that some bacterias have been known to mimic Crohn's, therefore could not give a final diagnosis. She gave me antibiotics to take in the event that it is just a bacteria, but i finished the last of them this morning and still have all the same symptoms as before, mainly mild abdominal pains, so any hopes of it being just a bacteria have to be ruled out now i think.

Whats strange is that the doctor who performed the colonoscopy and wrote the results, and informed me of the inflamation etc said it should not prove much to worry about. Once the pathology results came in, i revisited this same doctor and he again said the same thing, not much to worry about and some tablets should be all thats required, but that i needed to see a gastroenterologist for that. With the very same colonoscopy/pathology results the gastroenterologist said it looks very much like Crohn's. My gastroenterologist sent me for a special scan of my small intestine (which appeared all ok) and the doctor who performed the scan, after looking at my colonoscopy/pathology results, and even before doing the scan, was very surprised my gastroenterologist strongly suspects i have Crohn's. He said it could be early Crohn's but that there was not enough evidence to suggest that.

Very strange indeed. My next appointment with my GI is mid March, but i think i may try and get a second opinion elsewhere first.

PS. the main pain i'm getting now is in the upper center of my abdomen just below where the bottom rib cages meet. Its like a pang, for a second it feels like something in there is turning, or throbbing. Difficult to explain really. Anyone else get this?

 

[CDDad]

I assume you're in the US? If so, you don't have to tell your employer. Your medical history is your private info. But, telling them may help with time off for doc appts, etc.

I've had Crohn's for over 20 years, some years worse than others. But bad enough lately that I have a perm bag. Anyway, I can say that my sex drive has never been affected. But, everyone is different and I have read threads on here where many men say their sex drive was affected.

Not everyone gets pain from Crohn's. I can say that 95% of the time I was pain free. Sure I had tons of D, and urgency, but not much pain. Maybe that was a curse because it let me ignore my Crohn's for too long many years ago. No pain, so I just dealt with the "bathroom" type symptoms. Meanwhile inflamation was festering.

good luck.

 

[Astra]

Hi Ali
and welcome

In answer to your questions, bearing in mind we're all unique!

I have no pain, no gas, no bloat, occasional diarrhea, depending on what I've eaten! Apparantly I'm in remission, which, according to gastro doc, no inflammation present, no activity. So, I feel 100% 'normal', but last year I was seriously ill with an infection and blockage, but I've never had that pain since, so fingers crossed it doesn't come back!

I haven't had a drink for 18 months, my choice, going from a total beer monster to complete abstinance was a breeze actually! The day after effects flared me up so much it just wasn't worth it. It took 4 days to recover, then I would be out partying again!

Telling employers is a personal choice, but could be very beneficial. I'm on a risk assessment (I teach autistic kids) and have reasonable adjustments implemented thro Occupational Health, very beneficial!

Can't help with the sex drive tho! But, remember that if this is Crohn's, fatigue is a passion killer! Our body initiates inflammation then sends out a response to fight it, sucking up vital energy from all other organs, result? Meltdown! The last thing your body will want is sex! More like tons of zzzzzzzzzzzzzzs

xxxJoan

 

[ALI_101]

Thanks folks! I'm a UK citizen but now live and work in Poland.

Astra, i think you might have hit the nail on the head regarding 'sex drive' issues. I have been complaining of fatigue for around 2 years now. One year ago, quite some time before my abdominal pains began, i actually went and got tested for diabetis as i thought this might be the cause, it was'nt. Fatigue is a problem for me and its very likely having an effect on the old labido.

I began taking Pentasa two weeks ago. The first 10 days i was taking 500mg three times per day, for the last few days and for the future i am taking 1000mg 3 times per day. The thing is, i am still feeling all the mild pains around my abdomen, nothing has changed at all since i started taking pentasa (other than the fact i that have an easier time in the bathroom). Does this mean that it is not working or am i expecting results to soon?

My wife spoke to a doctor friend of hers who feels certain that Crohn's can be detected from blood testing, does anyone know if this is true? I'm tired of not having an official diagnosis and would like to know one way or the other without having to wait a whole year!

Also, can anyone tell me if they know of any good articles in the web that gives information on how to effectively carry out an elimination diet. I am going to have to get to the bottom of what foods are/are not going to cause me problems.

 

[Astra]

Hiya Ali

Pentasa is an amnio salicylate, it works like an aspirin, but it will only work to maintain, but you've got to get the inflammation under control first. Inflammation can/may be controlled with steroids sometimes, ie Prednisolone or Entocort.
There are also the immuno suppressants, Azathioprine or Mercaptupurine
Maybe your doc thought that the best way to blitz this would be Pentasa, but it might need a stronger back up. Have a read thro the treatment section and get genned up on all the meds available, but maybe you need a defo dx first!
Blood work can sometimes come back normal, have a read of The Undiagnosed Club thread on here, loads in the same boat as you!
Diet? this is a trial and error, hit and miss, different for everyone, we're all unique, sorta thang!
But a low residue diet works for me, it gives my bowels a rest whilst slowing peristalsis down.

http://www.healthcastle.com/low-residue-fiber-diet.shtml

good luck, and fire the questions our way!
Joan xxxx

 

[Ian]

I'd say it's very normal for it to affect your sex drive, I can testify that 'morning glory' dissappears when I'm in a flare lol. I wouldn't worry about it, once you have things under control I'd expect things to return to normal for you.

You just reminded me actually, last year when I was in hospital my housemate called me to see how I was doing. When discussing how much privacy I was getting (or wasn't), and being the type of guy he is, he came out with '****, what do you do when you need a w**k?!' haha. I told him 'I DON'T need one. Problem solved!'. This disease is very draining on the body. I'm almost certain that what you're experiening is perfectly normal and won't last forever

 

[soupdragon69]

Hi Ali,

Welcome to the forum!

There is a good website www.crohns.org.uk which was designed by the gastro teams at Addenbrookes in Cambridge - which is where I go. Has all sorts of info - see what you think.

Regarding elimination diet they also researched and devised the LOFFLEX diet which is Low Fat, Low fibre and Exclusion diet. I am currently trying to hunt out my book for another member who posted in the food and diet section of the forum. Will post anything I come up with as its been quite a while since I did it. Keep in mind each of us is different and it can be frustrating trying to figure out what is a permanent irritant and what only irritates when you "flare" as it were.

Keep in touch. Thinking of you and your wife. ((hugs)) to you both at this difficult time.

 

[Debbie]

I would certainly get a second opinion.It just doesnt make sense to postpone a diagnosis for a year,Ive never heard of that.You might be taking meds you dont even need.I really urge you to get that second opinion.Best of luck to you.