Undiagnosed, but i'm convinced

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Harry

Joined
Nov 13, 2011
Messages
16
Hello everyone,

Well, this is going to be a reasonably long story, but would help if any one has any comments on it.

It all started in the Christmas of 2008, where I was in a huge amount of pain from stomach cramps, and really hurt when going to the toilet. I was in bed all over Christmas and New year, and It kept me awake a lot too. I have to say this probably lasted a month, maybe a little more. After this I started to loose weight. A lot of weight. About 105 pounds in just under a year.

From then (Christmas 2008) I have always had poo that was liquid. Constant diarrhoea, although it never hurts. I would, and still am up until a week ago going 3/4 times a night.

Since the end of 2008, I have had the diarrhoea, but not the cramps. I mean I would get them sometimes, but not a lot, and when I do get them, they are not as bad as they were, or are now.

Now for the current case. Since mid October (2011) I have been getting cramps, getting progressively worse. I have also been vomiting most nights as well. At this point I went to see a doctor. She booked me in for blood tests, and a stool sample. The results came back as having low protein, and low calcium. They have booked me in for more blood tests, which I am waiting for the results at the moment.

Last week the cramps have changed, as well as the vomiting. Instead of just being in my stomach, they start at the top now, and travel down, all the way to my groin area. They feel like they travel. The vomiting is different as well. I pretty much vomit after eating anything. It is like my body rejects the food, as if it does not want anything inside it. Immediately after eating things, I get severe cramps. I have found a few things that are okay to eat, no vomiting no cramps.

My stomach also feels really tender to the touch, a slight bit of pressure, really hurts it.

I have no energy at all. As soon as I get in I go to sleep, and when I am out I feel like going to sleep.

Just to let you know, I am a 17 year old boy.

Thanks everyone and any replies will be really appreciated! :hug:
 
hey, Harry! sorry you've felt so lousy. i don't have much advice, i would just say to go to your doctor..you're already doing that :) and go with your gut. when you really feel that something is wrong, something is wrong. best of luck!!!!!!!!!!! give us updates.
 
Hi Harry! Welcome. You sound like you have IBD, and it has to be hard for young adults because a lot of doctors don't take them seriously or think it is all in there head. You have to be careful of your weight, too much weight loss is dangerous too.

Have you seen a Gi specialist? Where exactly is your tender to the touch area? Try to stay on a liquid diet for a few days I is hard but you may have to. You need nutrition for your body. Get help as soon as you can. DONT let anyone tell you it is all in your head.. keep us updated!
 
Thanks for the replies guys, It is really nice to have someone there to talk to suffering from the same symptoms :hug:

I have not seen a GI yet, just my GP as of yet. I have an appointment with my GP on Friday, and I hope that is when she passes me on to a GI. My tender to touch area is mainly on the right hand side, by my hip, but during cramps, all over my stomach.

I have just had some normal food, roast potatoes and lamb, and I have not had a reaction to it yet, which has made me very very happy! haha :lol2:

I will keep you all updated, and I promise I won't let them tell my it is in my head. Their not getting rid of me that easily! haha

Thanks!
 
Glad your stomach is :nonono: behaving! Right lower quad and middle area are the classic symptoms of crohn's. I am sure someone from your area can recommend a good Gi. Many here from the UK. Yeah we may not always suffer the same but sooner or later,someone is flaring. Still waiting myself for remission..I am in a mild to moderate stage at the mo.

You gotta good attitude..go get em' Harry!
 
Hey and welcome :) my little brother is named Harry and 17 too!! But it sounds like you are having tons of symptoms. As a matter of fact you are describing about the exact same thing I get when flaring, severe cramping and painless diarrhea. Also the weight loss. I'm no doctor lol, but I am pretty convinced it's some form of IBD. I'm so sorry, it's rough to go through this but you do sound like you are keeping positive! If she doesn't refer you to a GI, go seek one out on your own and get some scope tests done. Good luck, and do keep us posted!! :hug:
 
Thanks for all the replies guys! Really useful!

Well today has been interesting... Got a call from the doctor today saying that he wants to see me, tonight. Bit odd, as I only had the 2nd lot of blood taken on Friday (today being Monday) and the follow up appointment where I was going to find the results being this Friday coming!

Any way, went in tonight and the blood tests were back! Don't know what it is like in the USA, but in the UK, for bloods to be turned around that quickly is unheard of!

Although the results were alarming. I have tried to remember everything he said!

One test called CRP (i think) where the normal is between 1 and 10, mine is 127! I could not believe it!

Blood viscosity (normal I think he said is 1.3/1.4) mine is 2.7

Low on Vit B12

Low Protein

Low Calcium

He also said he is amazed i am still standing! Lovely!

Anyway after he told me all of this, he said that he is sure that its Crohns. He is passing me on to a GI ASAP, and the one that I will be going too, specialises in IBD, so thats good! He said that the GI might want to admit me to hospital for a few days and have a hard dose of steroids for a few days.

Im just glad that I am on the road to somewhere now, rather than to no where! haha

Anyway, thanks again guys, and i will keep you noted! :ybiggrin:
 
Thanks for the update and I am so happy you are going to be getting quick & aggressive treatment! Hope they can help you feel better soon!!!
 
Well at least you are getting somewhere. You are probably getting your dx of crohn's in the Ileum where everything is absorbed, betcha lol.

If you need help with supplements ,I have B12 shots way easier and less pills to take. Calcium should be taken with vitamin D3 to help absorb it. Protein if you are not big on meat, you get get shakes to help. Keep us posted more ok.
 
Hi Harry,

I am so happy to hear you were given your results so quickly! You are definitely sick with a flare!!!!!!
Hope you are feeling better very very soon!
 
Danny - I know! It is great! I am sooooooo happy that I am getting it all done so fast! I have been on the phone today with the GI and I have an appointment on Monday, but there is a possibility of it being earlier, depending on who my GP can get in contact with. To be honest, I want to go with the one that I have on Monday, as this one specifically specialises in IBD

Pen - If the Ileum is the part where the small and large connect, you are right. I think he mentioned that my inflammation is in that area. Thanks for the advice on supplements! I completely get what you mean, so much easier to get the shots rather than the pills. How long do the shots last compared to the pills? The protein is the part I really don't understand. I eat so much meat. Every meal I have has it in, most of it being fresh from a butcher! Must be my body not being able to take it in! haha

Natalie - Thanks! It means a lot that complete strangers are there to comfort and support me. That goes for everyone as well!

Thanks everyone for welcoming me in to your community so nicely. Even though I am in it for being ill, I still feel happy to be a part of it! :hug:
 
Another update. My GP has called, and after him being in contact with the GI, the GI has got him to put me on a prescription of Steroids at 30MG a day. Also as said in the post before, I have my appointment with the GI on Monday.

Don't actually know what any of this means in terms of the medication, but I guess some of you do! Hope it does some good! haha!
 
Usually the steroids help put you into remission and then other medications can then try to keep you in remission. Good luck!!
 
I don't know a whole lot about crohns Yeats but I do know a good bit on food allergies. If your dr has not done so already ask for a blood test to check for food allergies. And the one that has 88 or more foods. I am waiting to get blood result for a crohns dx but I also as food allergy test. Which showed a high reaction o rice and moderate to cucumber, pecan and yeast. None of those would have ever showed up an the basic food allergy test. That is why I say get the one with lots of food. I have been off rice for 4 days and am already starting to feel better. I hope your drs can help figure your problems out soon
 
Hi guys,

Just thought that I would update you as to where I am now. Okay, Had my appointment on Monday with the consultant/GI doctor. I honestly think I am blessed. He was one of the nicest men you ever will meet, and he is 99% sure that it is Crohn's, but to see how bad it is, he did an examination on my stomach, and booked me in for a CT Scan. I had the CT on Thursday, and all was fine, although the nurse had to get a doctor to do my IV as she could not find a vein! Still waiting for the results on this...

Started a course (5 over 2 weeks) of vitamin B12 injections (by the suggestion of Pen, Thank you very much! Heard they hurt, but they are not so bad!). Had the first on Tuesday, and the second on Friday, along with a flu and a pneumonia shot. The amount of needles I have had in me, I am like a pin cushion! I have my next B12 on Monday, then Wednesday and finally on Friday. According to the consultant, I will then be having them every 3 months.

This week some time I am going to be having a Colonoscopy. Not particularly looking forward to that one, but have read up on them, and they don't seem too bad. It seems the worst part of it is the laxative that is involved the day before. We will see what comes from that.

Me and the consultant also discussed on Monday possible treatment after the tests. I am carrying on with the steroids I have for now (staying on 30mg) and having my B12's. I have been given 3 names to research.

Azathioprine, Infliximab (Remicade) and Humira. I have been looking in to them and I think that the Remicade looks best. I do NOT like the idea of Humira, heard it hurts, a lot! And the Azathioprine seems to be just tablets for mild cases?! Is that right? I don't really mind having an IV once every 8 weeks, and it seems okay. Anyone have any experience with any of these?

I have also been prescribed Ensure Plus juice drinks. I read online that people go on these on liquid diets purely consisting of these drinks, but I am on them alongside foods that I have found safe. Spaghetti Bolognese! I am sick to the back teeth of that meal, but it is one that I get no pain with! Oh and toast!

Thanks guys, really means a lot that you are all there!
 
Thanks for the update. All sounds good! Are you feeling any better after being on the steroids for a while now?
 
Yea, I have to admit, even thought I am not feeling 100%, the steroids are seeming to help take the edge of it off, which does make the waiting for test results tolerable.
 
Hey Harry,

Good to hear you are having colonoscopy soon now that you have commenced the Prednisone. Normally it is something you would have done before commencing it.

Starting with the biologics, Remicade & Humira, is taking what they call the top down approach and is considered the more modern approach to tackling CD, hit it hard and fast straight up.
Azathioprine is not for mild disease, it is for moderate to severe but it does take about 3 months to become fully therapeutic so if going down that path it needs to be started while you are on steroids. You should also have a TPMT blood test before commencing it to ensure you have the liver enzyme needed to break it down. Both of my children are on it and it has worked well for them, although for them it post surgery.

We have an enteral nutrition forum here that will give you loads of info on liquid diets and supplements so have a good browse through it...

http://www.crohnsforum.com/forumdisplay.php?f=161

Hope all goes well with your colonoscopy this week. My son is your age and he has had one. I'm not sure of the procedure there but he had his under a general anaesthetic. He didn't find his prep too bad, he had pico prep and only needed to drink two standard glasses. It didn't taste so good but refrigerating it helped heaps.

Good luck!

Dusty. xxx
 
Hi Harry,

Having had Crohn's since 1966, which was not finally diagnosed until 1976, do not be fobbed off by GP's, I have found that colonoscopy is nothing to worry about, I have had three in the last several months, and several over earlier years, all have been entirely painless.

Insist that your tummy pains/cramps are always investigated, and if polyps are noted on the colonoscopy insist on the removal of these.

best wishes.

Peter.
 
jack dusty said:
Hi Harry,

Having had Crohn's since 1966, which was not finally diagnosed until 1976, do not be fobbed off by GP's, I have found that colonoscopy is nothing to worry about, I have had three in the last several months, and several over earlier years, all have been entirely painless.

Insist that your tummy pains/cramps are always investigated, and if polyps are noted on the colonoscopy insist on the removal of these.

best wishes.

Peter.
Click to expand...

Hi Jack welcome to our forum. It would be great for you to tell us your story about your IBD. Hope you join us!

Sorry for the hijack Harry.
 
Hey Harry so glad you are getting alot of help so quickly. As dusty says Azathioprine is not for mild cases. WE are all different in the meds and the new information I was given by a Bowel surgeon specialist is "Hit it hard and then back off with the meds. I used to think it was start on the mild doses of meds but not so, you have to attack it to get it under control. Avoidance of Prednisone throughout your life is better too avoid! Most doctors hate the drug but it helps with the pain in the short term.

I have been on Remi and Humira, either way needles dont bother me. I have b12 infusions once a month. Colonscopies once a year. Do you know the prep you have to take before your scope??? BTW I hope you will be near off or off Pred whilst having a scope, sometimes if can give a false negative...in my experiences anyways. Let us know about your prep and we can help! NO red or grape jello day before, it can look like blood. :hang:
 
Thanks Pen.

No, I don't actually know any of the prep for before the scope. But, I presume that I will still be on the same dose of Prednisone (30mg) as there has been no talk of reducing it, and the scope will be some time in the coming week. I will ask about this before I actually have it done. The consultant will be calling with the results of the CT soon, so I will ask then.

Thanks
 
If you guys have PicoSalax in the Uk ask for that one! Only two cups the rest is water... and Dulculax 2 the night before the prep. One good advice avoid meat the day before your prep, meat takes so long to digest...I have had many scopes and know what is easier lol.
 
im convinced too... i went and got my endoscopy and my colonoscapy done and they said they took lots of biopsies and they said my colon was red and i have perianal skin tags and such as well as rectal bleeding and pain and sores and fatigue....

so im in the waiting game untill i get my results.... i hope i get treatment for whatever is wrong with me...
 
Well, time for another update!

Went to see my consultant yesterday to look at my results from my CT scan. In terms of whats going on inside, it is as we expected. It is mainly effecting the part where the smaller connects to the large intestine, can't remember the name of that specific part. The rest of my intestine he said looks okay, no blockages or abscesses, so we can proceed with the colonoscopy. He also said that the part I mentioned looks to be the only area effected to badly, which is good!

Got my colonoscopy booked in for the Thursday before Christmas (the 22nd). In terms of medication I have been told what I am going to be starting. I will be going on Azathioprine and Humira. He gave me the option between Humira and Infliximab, but I chose the Humira purely due to the connivence of it. Would you guys say this is the right decision? He also said that I would be on both for at least a year from now.

I have my 'training' next week where I have to get the 4 shots in 1 day, but I don't really mind too much. I mentioned about the pain factor with Humira but I found the vitamin B12 did not hurt at all. He said that if I do not find the B12 to hurt, it is most likely that the humira wont hurt me. I have also come down to 25mg of Pred.
 
Hi Harry,
Its good to hear you are now being taken great care of by the GI doctors.
You certainly have a big lineup of medications so it looks good and hopefully will bring you into remission soon.
Have you had a TMPT test ordered before taking azathioprine, very important to get this blood test.
Good luck with your colonoscopy, it will be a breeze. The prep is the hardest to get through although if you get the pico salix prep it is a lot easier.Feel better soon.
Hugs and best wishes
Trysha
 
zathioprine/blood tests

Hi Harry, and all,

With reference Azathioprine, I have been prescribed this for a number of years now, one 50mg tablet 3 times daily.

It is important to have regular, FULL, blood tests because of possible side effects from this product. (?) liver/kidney etc.

I have a full blood test every 9 weeks and have done so ever since being prescribed this, I suggest it is worth checking with your Doctor if you are not having bloods tests to date.

Regarding B12, I have a B12 injection into my arm every six months, this is not at all painfull, and I have never had any side effects from this either.

Happy Xmas everyone
 
Hey guys,

In terms of the TPMT, yes, I had that done today. Also had a chest x-ray to check for TB. I have the consultation tomorrow at the hospital tomorrow to talk about Humira, and then the day after I will have the first 4 injections! Ouch! oh well! haha!

Yes, I have been told that I will be having regular bloods to keep an eye on me.

Merry Christmas!
 
Yes, it seems to be routine from what they said. Anyway, had my loading doses today (4 pens of Humira) and went okay! First one that the nurse did hurt, quite a bit, but really nothing to worry about. I then did the next 3 and they were better than the rest. The last one I did not really feel at all!
 
Glad to hear you got the 160mg loading dose (4 pens), my hospital are a little conservative and only do 2 pens. I bet 4 kicks the inflammation's arse much quicker! Will you be on fortnightly shots from now on? Hope it works wonders for you :).
 
Thank you! I hope it works well too! How is it for you? I see in your signature that you take 6MP, is that the same as azathioprine? If it is, how do you find the combo between that and Humira? Thats what I will be on.

Well, I will be on fortnightly shots eventually, but in a fortnight, I am getting another 2 at once. Then after that I will be on fortnightly. At the time I go down to 1 Humira shot (4 weeks time) I will also start on azathioprine, although I am not sure of the dosage of that just yet.

Merry Christmas!
 
Well, I have my colonoscopy tomorrow. Had my prep day today, and I am so so hungry right now! haha! According to the instructions that my hospital gave me, no food from 1PM this afternoon until after the procedure. Thats over 24 hours! So hungry! haha! Oh well, the laxative has been working (I used Fleet) and was not too bad tasting, but I don't want to drink it ever again! Had the first little bottle at 5PM tonight, and have the next one at 8AM tomorrow morning.

Wish me luck guys!
 
Good luck Harry!
How are you feeling after being on medication for a while now? I hope your scope shows signs of healing!
 

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