Is this Crohns??

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Skz

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I will try to keep this as short as possible.

I am now 16 years old, 6'1 and 215 lbs (my aunt, a nurse is convinced I dont fit the crohns profile because of my weight)

2 years ago I found bright red blood in my stool

3 months ago I had a colonoscopy done because of it

2 weeks ago I was diagnosed with Proctitis and was persribed Salofalk

Although I had this diagnosis my doctor wanted me to come in after a month or so of medication to do a barium x-ray.

For as long as i can remember I have had diarrhea on and off, usually once or twice a week, never more than 2 times a day. I thought nothing of this but my doctor though this was far more important an issue than the bloody stool.

Now onto this past weekend.

I had stopped taking my Salofalk for 2 days because it was giving me burning diarrhea which was very uncomfortable. On the third day of stopping I awoke to the worst abdominal pains I have ever experienced, yet there is no word to quite describe what the pain was. It is now monday and I still have an uneasyness in my stomach and significant loss of apetite. I dont have fever. I am wondering if what I experienced was a "flare-up". The pain was FAR worse in the MORNING on all three days to date and has been very bearable if not non-existent during the evenings!

My GI is away for another 2 weeks on vacation and the on call doc has only suggested I double the SaloFalk treatment.

Not knowing what is causing this pain is almost as unbearable as the pain itself.

Life seems Hopeless. What keeps all of you going?
 
Life isn't hopeless. What keeps me going is the fact that Crohn's isn't who I am. I am a person who HAS Crohn's... not a person that Crohn's has.

Life's too short to be deemed hopeless. We are all dealt a hand and we need to learn to play that hand.

I have so much to live for... a future, a life, a career. I'm not letting it hold me back

I don't know if you have Crohn's, but if you do, it isn't the end of the world. You just gotta learn to cope and handle things.


Try to find humor in things... it helps.
 
Thank you Katie for the words of encouragement.

AD, I have not had a CT scan nor did my doctor mention one. During the colonscopy they found inflamation in the rectum, hence the Proctitis diagnosis.

Does not having a fever rule out a Crohns flare-up?


Thanks!
 
No, most are without fever untill things get real bad. If you read around somewhere they just now are talking of having Crohn's of the rectum.
 
Damn, not the news I was looking for. I am remaining optimisitic that this is just a unrelated stomach virus. Unlike most of the crohns stories I have read I feel much better after forcing down some food. My Bowel movements have been pretty regular the last while too. I also dont understand why the pain is so bad in the morning, perhaps lack of food in the stomach.

I guess it would be best just to wait for the doctor, I really hope hes enjoying his second vacation this year.
 
Welcome to the forum. I want to reiterate what Katie said about being a person who has Crohn's. Crohn's doesn't own you and once you get some treatment you can live a fairly normal life.

If you still feel bad go to the emergency room. Ask to have a CT scan done since you said you haven't had one yet.

This disease is extremely personal. Meaning that everyone seems to have something slightly different wrong with them. Some don't lose weight, it depends where the disease is located for that, some gain weight, some have constipation, some have diahrrea, you get the point.

Don't wait if you feel bad as that could just intensify your problems. If you feel bad go to the ER although it can be a scary experience. Tell them what you are diagnosed with and ask if you can see the GI on call.

Best of luck to you
 
Weight loss is common but not always the case. I am very overweight now because I was on steroids for two years. VERY OVERWEIGHT! There are others here too...

I would agree that you shouldn't wait. I would go to the ER and get your testing done. Who knows you may find a GI doctor who is more attentive and willing to accept you as a new patient.
 
hi Skz - welcome to the forum.

so sorry to hear whats happening with you right now. it sounds as if most of us are thinking similar - & that is for you to seek more medical help on this issue, and quite possibly further investigations. i haven't heard of Salofalk, so i don't know if it would be helpful if it turns out you have Crohns rather than proctitis.

it's good that you have a GI and are not just relying on your GP's advice, but a real shame the GI is away just now. if things seem bad enough to make you feel really poorly, i would agree that you shouldn't wait. your GI's secretary should be able to direct you to someone who will see you in his absence.

and about the 'life seems hopeless' thing - yeah, i know that feeling very well. the blues, unfortunately, is part of Crohns, and it typically comes and gets you in the early days after diagnosis, or even while you're waiting for diagnosis. take heart, you'll be ok - all of us here have been through, or are going through, the 'delights' of Crohns Disease, and each of us has found a way to cope with it as best we can. one of the things that helps greatly is support - and you have it here, all the way. :)
 
Well to keep you guys updated, I went to the local ER today to get some answers.

After some blood and urine work and a few hours of waiting I was sent home with a perscription of Buscopan and no Diagnosis.

They told me to follow up with my GI and basically refused to give me a CT scan as they saw it as unecessary.

They felt it might be ulceritive colonitis as opposed to crohns (very similar from what I am reading online).

Well it basically left me with more questions than answers. :confused2:

Not knowing really is the worst of it all.
 
Ah that's so frustrating. Call your GI immediately and get an appointment as soon as possible. I know it's frustrating not getting answers. At least when you are diagnosed with something you know you have it instead of constantly worrying what you have. Good luck and keep us updated. I hope you start getting answers soon. Press for a CT scan
 
Keep in mind that Crohn's and Ulcerative colitis can be notoriously difficult to diagnose. There are plenty of people here who will tell you about months or years trying to find out exactly what was going on.

I am one of the lucky few. I had a firm diagnosis in a few weeks. I was pretty bad though.
 
well done on taking that journey to A&E, and i hope the Buscopan helps you - its a good drug, have used it myself. & whether it's Crohns or Colitis, if you're having spasms, it will help.

i had a similar thing at my A&E recently - i knew i needed an ultrasound scan, but they refused, sent me for an xray instead. surprise surprise, the xray showed nothing, and i had to wait weeks for a GP referral for the ultrasound, which proved to be exactly the test needed to show what was going on.

hang on in there, hopefully the meds will take away the pain until your GI is back, and you can get the ball rolling to a proper diagnosis.
 
Thanks alot for the words of encouragment, Hard to believe some of the thoughts going through my head only a few short days ago.

The medication seems to be helping with the pain but its hard to tell if its the evening remmision I have been experiencing or the buscopan, guess I will know for sure tomorrow morning.

Any advice on diet? I have read online but so many of the diets are contradicting and not knowing my ilness makes it all the harder. Trial and Error has told me to stay away from onions, but I am scared to eat anything other than Kraft Dinner at this point.

Thanks again, vey glad I found this community
 
If you are experiencing abdominal pain think about going on a liquid diet. Eat broth, jello, and othe liquid things so that it allows your intestines to heal and it gives them a bit of a brake. Try ensure if you are not lactose intolerant or boost if you are. Don't eat anything with seeds or nuts or any type of corn. Try to keep things simple and bland for the next few days. Best of luck my friend and hopefully you will be able to find out whats wrong real soon.
 
It is perfectly reasonable that you have crohn's. It's possible that its not though so don't become fixated on crohn's disease. 8 years in I'm still even a little curious about my problem actually being behcet's but the treatment isn't any different so it doesn't matter much.

My case wasn't much different from yours. It took me 3 years to get a diagnosis and only because I got kind of a crazy doctor just out of his residency who was strangely interested in figuring out what was wrong with me. Most doctors are lazy. The older they get the worse they get usually. Looking for I doctor I really do recommend finding a young one that still has some energy left.

Anyway, I had intestinal inflammation. No noticed ulcers in my colon or anything like that early on. The disease is very different now and it seems to be showing more and more of the 'typical' crohn's patterns with 8 years to slowly work its magic. I was forced out of high school for ruining their no-child-left-behind statistics, bounced from doctor to doctor, and generally treated like I was faking it to get out of school until I finally found a doctor who thought I was interesting.

The majority of my illness was just incredible pain almost every day for years. They put me on intestinal antispasmodics as well. I found them frustratingly worthless as I laid on the floor screaming in pain. In hindsight they probably did help some (better to take them than to not take them) but the dose was probably too low and no one explained that what they told me were pain killers for my intestines had no pain killing affect and that's why they seemed like they were not working.

The antispasmodics don't fix the problem in any way though. If you're still at an inflammation only stage though you'll find Prednisone is practically a cure. It takes away inflammation and if that's currently your only problem then woohoo! A cure with lots of nasty side-effects unfortunately. I went from 150lbs (I'm 5'5 so I wasn't underweight either) to 175lbs and I was only taking the stuff 1 week out of the month to keep the side-effects down. Had I known about the weight gain problem before hand, though, I probably would have done better at avoiding it.

I'm currently 155lbs (slightly overweight) and I'm not on any medication. I've been up to 175lbs with the Prednisone and I've been down to 140lbs with dieting during a brief healthy period. I find that I usually gain weight when I'm sick because I've figured out that for 20-30 minutes after I eat the digestion in my stomach slows my intestines and provides me some relief. This leads me to over-eat as a compulsive pain-killer. My activity level also drops drastically. When I have a flare I'll usually gain 5-10lbs. When I'm feeling better I'll lose that same 5-10lbs. I bounce rapidly between 150lbs and 160lbs all the time.

If you want to read a little more on my story you're free to do so: http://www.crohnsforum.com/showthread.php?t=2987

I have to say though, I'm really sorry because I know what its like, but you're probably in for a very bad period of your life while you are waiting for this to be properly diagnosed.
 
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Well I just wrote my final exam and im feeling a whole lot better, I am assuming stress played a big factor as I always freak out around exam time.

I have recently learned that my grandma had some type of colitis throughout her life that caused her to vommit and have abdominal pains after eating certain raw vegetables and almost all fruits. I am hoping my case is similar because she only had a few of these episodes during high stress periods of her life and was able to live the rest normally and without symptoms.

Thanks for the story and link colt, Helps to know others are in the same boat. Your avatar of your family also provides a certain sense of hope at a normal life.
 
Colt said:
I find that I usually gain weight when I'm sick because I've figured out that for 20-30 minutes after I eat the digestion in my stomach slows my intestines and provides me some relief. This leads me to over-eat as a compulsive painkiller

.
Click to expand...

I am exactly the same and I feel SO much better reading that - I eat to kill the pain.

In the morning if i do not eat or drink and elemental carton the pain in my side is horrendous - eating little and often eases the pains meaning i eat all the time.

Also I find the diarhoea to be "easier" when I have eaten - if i starve i will still get it but it will hurt a lot more.

I am glad it's not just me.:ycool:
 
Another Update.

Called the oncall GI today to see if my black stool was caused by some sort of internal bleeding. After asking of my symptoms he decided to perscribe me Metronidazole at three tablets a day.

Anyone have any experience with this medication?

Thanks
 
metronizadole is one of the antibiotics i'm allergic to - only had it once, in hospital, and had a severe reaction to it. i don't think its a common allergy though, i've heard of many people who are happily on it and it works well.

hope it helps you Skz.
 
Thanks for the reply Pen. The pharmacist really made the point of no alcohol, guess it must be my age. I dont drink anyways so its not much of a problem.

Does anyone find it uncommon that this was perscribed to me over the telephone? I hate going to the hospital so Im not complaning, just find it a little odd as they have made me come in for positive test results in the past.
 
I used to live in Canada. I like to make a point to Canadians as to what the American system is really like because I don't think they have any idea.

I'd rather have Canada's doctor shortage. You can still go to the hospital and effectively get primary treatment even if you don't have an official primary doctor. I called a clinic today. They told me it would be an 8 month wait for them to even see me once.
 
I waited nearly a year to get my initial meeting with my current GI. Well worth the wait.. Dont think another GI would have agreed to the LDN experiment. But she has close to 2000 patients... and she has gone on maternity twice on me! Damn!
 
I'm gonna have to disagree Colt, I like the American system because if we went to the universal system, us as Crohn's sufferers (and others with pre-existing conditions) would receive more generalized care. Not to mention the doctor shortage and the inability to receive certain treatments.

I do, however, like the idea (if we HAVE to change to a universalized healthcare system) to be able to have your own private insurance. I personally think that we should adopt a universal healthcare system for children aged birth to 18 (or when finished with college) so that they are cared for.
 
I dunno. Think the UK NHS service could teach the US and Canada a thing or two.

As for private insurance... there are just too many loopholes, and these insurers are out to make a profit. I don't think making a profit and making folks well, least taking care of them, are compatible. I know that making money makes a lot of things happen... but, in our everyday lives, we deal with things that we know are going to cost us. Some things you just have to pay for... and providing 'basic' health care to the citizenry IS a necessary and justifiable cost.
 
Shrug, I am on state/government insurance in the USA. I think it is just as good as the private for-profit insurers. My daughter has 2 insurance carriers, private and state.
 
Great movie Kev, although yeah, as you said a while back, Mr. Moore has his own agendas. Still it's hard to refute what is truly a fact in that movie (the problem is deciphering fact from lie)
 
katiesue1506 said:
I'm gonna have to disagree Colt, I like the American system because if we went to the universal system, us as Crohn's sufferers (and others with pre-existing conditions) would receive more generalized care. Not to mention the doctor shortage and the inability to receive certain treatments.

I do, however, like the idea (if we HAVE to change to a universalized health care system) to be able to have your own private insurance. I personally think that we should adopt a universal health care system for children aged birth to 18 (or when finished with college) so that they are cared for.
Click to expand...

What do you mean generalized care? My wife went through the Canadian medical system as a permanent resident (not even a citizen) with rather serious problems (asthma and then seizures, etc from what turned out to be hypoglycemia). There's no such thing as a pre-existing condition for universal health care. There's nothing to exist prior to.

The medical treatment was by far superior to anything I'd seen in the US and I work in the medical field in the US. From what I saw I greatly envy those workers. My own work quality would be many times better if I was in their situation. They didn't even have to abuse people to get their work done due to the always profit increasing short-staffing. Nurses, CNAs, Lab Techs, etc were everywhere in hordes ready to help.

If you're sick, you get treatment. It doesn't matter what your problem is. People with chronic illnesses get priority treatment there because the Canadian system makes heavy use of triage to make sure the most serious cases always come first. No one buys a spot at the front of the line like in the US.

The doctors were difficult to get into as a primary physician but we lived in the middle of nowhere in Nova Scotia. The only other population for miles were the trillions of mosquitoes swarming the yard every evening. Even then it wasn't any harder in my experience than trying to get a primary physician in the US. And unlike in the US you can always go to the hospital if you need health care without having a primary and they would see you. You might have to wait in line behind the people with more severe problems though.

As far as not receiving any treatments my wife more tests than she needed by far just to rule out small possibilities. Every treatment and test that was available in the US was there in Canada and if the doctors thought it would help off she went to get it. If the doctor ordered it you just got it. There was no government official wielding veto power everywhere we went. I have seen insurance companies wielding veto power every chance they get though.

I went through worker's compensation because I got hurt doing my job and they sent me to an office that specializes in worker's comp cases. They denied me every treatment because they said they didn't want to cost my employer any more money than they had to. Because of that wait I spent 2 months without the use of my right arm instead of the 2 weeks it should have been. In Canada I'd have been all healed up and back to full duty at work being nice and productive ASAP. Instead, since I was on 'light duty' removing my claim to further time-off disability claims it was in the interest of that doctor to forgo an expensive MRI and just drag me along until my physical therapist's pleas for an MRI got too annoying for him.

Why only until people turn 18? Do they stop being sick at 18? That's what happened to me. I was on Medicaid. I was diagnosed and began treatment shortly before my 18th birthday. Then when I turned 18 my doctor wrote me a script for a big fat stockpile of my meds and said he was sorry. That stockpile ran out after a year and here I am now in terrible condition because I've had no medical care for the past 5 years. I miss a lot of work and at the current rate should be unable to hold a job in 5-10 years. If I were getting treatment I'd have much higher productivity and be able to avoid dieing young and being a drain on social security later. A net gain to long-term tax revenue and the economy (since I know human suffering doesn't interest anyone).

BTW, Canada spends a lot less on their health care than we do. Removing the 75% or so profit margin helps.

(My apologies for dragging this off topic. I'm weak.)
 
Colt-

Hey I would respond to your post, but I have a feeling that a lot of things I would say would piss you and a lot of others off, and I truly like everyone here, so I'll just stick with what I've already said.

I'm the type of person who has to be careful when asserting her opinion, because a lot of people disagree. A lot of people see my views as uncompassionate to those in special situations. But I think in a game theory state of mind. Whats best for everyone in the functioning society, regardless of certain situations?
 
Fighting amongst ourselves over the respective flaws in health care services isn't productive. Agree to disagree, then move on. Otherwise we're like fleas arguing over who is living on the better dog.. or dog part. I'm Canadian, and proud of it!! Yet I see major loopholes in the Canadian health care system.. like prescriptions I can't afford... and look at the UK NHS with other side of the fence envy, even lust.

In 1998, 1999.. leading up to Y2K, people in my field, IT, could literally walk into any job in the US and write their own ticket. I opted not to.. for two critical and valid reasons.. even tho it would have meant a minimum 50+% increase in pay (and that's w/o the exchange rate advantages.. another 20 -30% increase). I knew retaining custody of my kids whilst moving to another country was number one concern.. but the other was the cost of private health coverage in the US.. The cost for a family of three was tremendous, and there were really a lot of loopholes and conditions... and the loss of my Canadian coverage left me feeling extremely vulnerable. I'm not stating this as a condemnation of the US system... just the 'real' concerns of someone looking in from the other side of the fence. Survival of the fittest is natures way... but in a community, we need to look after one another. It doesn't make us weaker as a community, look at a wolf pack. They employ survival of the fittest mentality (they have to) .. but they also look after one another. Hey, maybe that's why Canada is Canada, it originally was an Indian word meaning 'village'.. community. Just my thoughts..
 
The abdominal pains have gotten alot worse. It is becoming hard to do anything.
I am starting to doubt this is crohns, which I am not sure is a good thing.
I have not had diarrhea in over a week. My diet appears to have no influence on my symptoms. The pain starts off as unbearable after a few minutes of waking up in the morning. It then gradually tapers off towards the night and I start the cycle all over again. It is now 11:38 pm and I am only now feeling well enough to get out of bed and on the computer. My appetite is non-existent and I have lost 17lbs. My medication (flagyl) is doing nothing to help and I am considering that any improvements I experienced earlier were simply placebo effects.

It feels like I am stuck in a terrible never ending cycle. It is very hard to focus on any positives in life. I keep pondering the point of life from a very negative perspective.

My doctors approach seems to be a trial and error. He has taken me off of the salofalk as its administration has caused Anal fissures for me while not helping with any of my symptoms. I had a barium x-ray done on Friday and am awaiting results.

I hope I am not blowing this out of proportion, I know there will always be others that are worse off but I feel guilt in taking comfort in that.
 
Don't EVER feel bad because someone else has it worse than you. That will ALWAYS be the case. You are just as entitled to feel scared, frustrated, angry, hopeless, afraid, and all the other emotions that comes with medical problems -any medical problems.

My diagnosis of Crohns I actually cried out of happiness as I had 8 months of ER visits and symptoms. But years ago when I had a pelvic pressure point I went through YEARS of accusations, let downs - my doctors, whole family, and husband thought I was crazy. I did not have 1 single person that believed me and I went through hell and back to get my vindication... and when this took only 8 months I cried with joy.

I completely understand what you are going through and I wish I could give you a big hug. Finding something to be grateful for is nothing to be ashamed of and will really help you for the long haul. I hope that whatever they find that they find it quickly and with as little stress as possible. Just wish there was something more I could do for you!!!!
 
Skz, I'd go to the ER if possible, if it's like what you're describing, trial and error is useless and a waste of precious time. This is too pressing. Best wishes, take solace in anything you can, there will be better times and this will make you stronger.
 

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