Whats wrong with me??

Hi,

I have the most confusing problems and doctors! I have had really bad stomach pain and diahoria for the past 3 years and still they are trying to find some other cause then crohns. I am exhausted all the time and often have a low grade fever which i barely even notice i suppose because i am so used to it. I have all the colonoscopies, endoscopy and camera pill, barium follow through, everything else i think. the only positve result was lymphocites in the ileum, which indicates inflamation. the recommendation from the lab was that i have another colonoscopy but my gi at the time thought that was not enough to warrant another, he said its quite common to have lymphocytes there!? so all i have been taking for the pain is lots of codiene (30mg, with paracetemol), 2 tablets three times a day on average and amytriptyline (50mg)(which helps me sleep and reduces the pain and general feeling of being sick). So, I now have a new doctor who thinks i might have TB!!? And he said if its not that, then I should spend a couple of days in hospital for them to monitor me and run all the tests they want.

I really don't like any of this, I made a deal with him that if the test results come back as negative which they will, then he will email me a prescription for some steriods, I want to go on the entocort ones that are quite weak but he said no he would prescribe the strong ones which i presume to mean predisone! Having read all of your complaints over the years about pred I really dont want this drug, the side effects sound horrible! Crohns is really the only diagnosis which makes sense to me, obviously i dont want to have it but i do want to get on with my life! I am sick and tired of being sick and tired. Sometimes when the pain is really bad i just wish someone would cut my intestines out and I would be done with it! luckily the pain subsides a little and i forget that bit. I am totally exhausted most of the time, sometimes I get back from work and turn on the 7 o'clock news and within a few minutes I haven't drifted off to sleep, i have passed out and nobody can wake me for 2 hours! and I mean passed out, I wake up in the same position I was in when sitting but just horizontal. I really don't mind the diarrhoea, its the pain and the exhaustion i can't stand.

Basically, after that rant, sorry, what I would really like is to know which drug to ask for? I know they all have side effects, but which have the least? and which are least damaging long term?

its a pity those icons below are limited to one, I would tick most of them if i could........

Hi Clare! I'm so sorry you are still undiagnosed. You will find that lots of people on this forum are in your shoes right now. It would feel so good just to know what you have, whatever it is, so that you could start getting the proper treatment!

There are a lot of treatment options once you get diagnosed, but until then, I'm not sure what to tell you. I'm so sorry that you are going through this and that I can't be of more help. Hopefully someone will jump on who has a better idea.

In any case, you are welcome here! You are not alone in anything you are going through or feeling, including just wanting to have your guts taken out and be done with it. I can so hear you there! Good luck and see you around the forum!

Sorry to hear you've been so ill and it's horrible not having answers. I'm no expert, being recently diagnosed, but I would say give the steroids a go. My GP put me on a short course of Pred to see if it would relieve my symptoms, cos I had a while to wait to see the gastro consultant and was feeling worse and worse.
With a short course, on a fairly low dose, I've had a few side effects but not the moon-face. I am feeling so much better after being on it for about 6 weeks now. Another thing is that, if you are improving on a steroid, it's a pretty good sign you have inflammation which is responding.
Some of the other members should be along soon with their experiences and you can weigh up the pros and cons.
Helen x

Hi Clare! I know a hospital stay and lots of testing doesn't sound appealing, but if it is answers you seek, you might have to do it.

Of course you don't want CD, but as you said, if you know what you are dealing with, you will be able to address it. And like Nicole said, if/once you are diagnosed, there are many treatment options you can try.

Let us know if you decide to go forward with the testing and keep us posted!

Greetings and welcome!

Ummm, the presence of Lymphocytes is what got ME diagnosed with Lymphocytic Colitis. I would take your colonoscopy results to another GI and get a second opinion.

In the meantime, we're here for you! I'm so sorry you're going through what you're going through

*hugs*

Hi and thank you All!
David, my gi told me I probably didn't have lc because I have so much pain? I don't know if he is right, do you have a lot of pain from your stomach?? I do, quite alot actually, during the day at work I am on them every 4 hours??

Hi, I fully agree with xJilly. Go to the hospital, get a proper diagnose and start proper medication. It's not nice, it's painful and really not what you want when you already feel bad but .............. it's propably what you need. Good luck, stay cool!

Yes, you are probably right Catherina, but going into hospital just fills me with dread and grey and cold... I can't do that if I'm not on deaths door.. and I am not that!
What I really need is some advice on how to cope with the pain and exhaustion? And also what drug to ask for? My gi was saying that even the term crohns covers a whole gamout of causes and symptoms and he wanted to narrow that down but I have had this for so long I dint really care what the cause is anymore I just want some relief!?

I am sorry Clare if I sounded as if I don't understand you. It is just that many people just go on suffering for so long, going to some of the tests, drop out in the middle because it is an exhausting and painful procedure. They wait until Crohn's flares or their immunesystem goes bogey again. End up in hospital, do some testing again and so on and so on. Almost everybody here has been there. It is a relief to finally and definately know what's wrong with you even though it is a messy disease. At least then you know for sure why you feel crappy and so tired. At least you then know that it is normal and ok to feel like that sometimes (or very often). At least then you know why you are taking the medication that often has bad side-effects. Just taking some pred or other medication might even harm you and cover up some symptoms for a while, even confusing the doctors more. Please do yourself a favour and get into that hospital. The week will be over before you know it and then you hopefully get the meds tailored for your situation and system.

By the way, I have been going through exactly the same thing, finally ending up in hospital with a burst testine, sepsis, burst galbladder and damage to my blatter. I learned the lesson the hard way!

Hiya Clare
and welcome

Ok, deeeeeeeep breath!
Stressing about all of this isn't doing your psyche any good.
If you were to do nothing at all, chances are you will be at death's door!
I speak from experience, the Prednisolone saved my life last year, I was blocked and didn't know it, it got infected, why? cos I didn't do anything about it. And it's inflammation that causes this, and it bloody hurts!
Stop reading horror stories about the Pred, try them for yourself, you'll be amazed how good they are, how much energy you'll get, how different your life will be.
If you're sick and tired of being sick and tired, go ahead with the steroids, if you respond to them, chances are you've got an IBD.
Once the inflammation is under control, the gastro will then be able to decide on a long term maintenance med for you, but the inflammation has to be under control first.
Good luck with your decision, and be your own health advocate.
Joan xxx

Im so sorry you are going through all of his! Previous posters are right, there are several other people on the forum that are going through what you are going through. As you can see by my siggy, i have gone through almost every test possible but the pill cam, and they have all been normal. If i were in your shoes, and they offered a hostpital visit, I would take it. Especially if you are feeling bad, since if it is one of your good days the tests might come back normal.

I really hope you get answers soon! I know how frustrating this can be, feeling awful and have no answers. Hang in there!