I'm on my way... I try to take as little time from work as possible. Luckily my boss is very understanding - and its a small locally owned business which is a huge help as my old job would have fired me by now.
Where do I start? Hmmm, well the Barium Enema showed nothing. But get this, the radiologist did not mention on his report that during the barium swallow I still had a stomach full of food! My GP was very surprised when I told him of this. He said he will check it out, but it it indicative of a "functional" disorder - but the fact that the Dicetel, Bentylol and Buscopan did NOTHING for me kind of blows that idea out of the water. So he is stumped on that one.
He also told me that I have what he thinks to be "migratory" arthritis... the meaning of this I am not sure... but he said that this is indicative of IBD - more specifically Crohn's. (I have been previously diagnosed with arthritis of the jaw after sustaining a blow and having xrays on it)
My mouth ulcers - he thinks is caused by Crohn's.
He said that he still does not think he has investigated this enough for me, and is sending me to a new Gastro. He wants me to have a colonoscopy and an endoscopy, and have biopsies done. He said that he believes I may have "microscopic" IBD. He was upset that my last gastro did nothing for me, but the sigmoid, and when he found no cause for blood or pain, just shrugged me off - saying I MUST have "microscopic" hem's because he couldn't find anything.
Is that everything? Hmmm. I think so. I came out of this appointment feeling a little better. At least he is honest, and he tells me that he just does not know, but is making sure I get all the testing done.
Oh, I also have "tension" headaches, that he cannot link to anything. But he thinks that these headaches are whats causing my confusion, brain fog, lightheadedness, etc - which I thought would have been linked to the Iron or B12 deficiency, but he doesn't think so. I don't know.
Other than that, he thinks all of symptoms/problems are linked, and he is determined to find the cause.
For now, I have to live with this "migratory arthritis", the food intolerances (most recently I have cut out bread and am trying to eliminate all gluten which is not easy - so, so far that's gluten, dairy and eggs!), the headaches, the skin rashes, mouth ulcers and the pain until I see the new gastro. He has offered nothing for relief other than buscopan, which again, does not help. But he seems adament that I have an Inflammatory Bowel Disease.
I have a quick question though... is there anything over the counter that I can buy for some relief from the headaches, or the abdominal pain? Everything I have tried so far has not really helped. He told me that for the mouth ulcers to gargle with salt water... what do you think?
I think thats it for now Can't think of anything else. Oh yeah, I did have my B12 shot again... hes doing that for me approx evey 3 weeks now... or whenever I mention it lol
Argh still feels like I'm forgetting something. O well, maybe i will think of it tomorrow. This is one thing that i hate... I lost my mind and cannot find it, I really don't think it is going to come back... I ramble alot, and I forget things within seconds, it takes about 5 times of reading something before I start to comprehend what it was... very frustrating.
Oh, would you believe that after he looked at the enema results he asked ME what I would like to do next? I was shocked. So we actually discussed all of my symptoms and all of my worries, and he still feels very strongy that they are all linked and all point to Crohn's. I was dumbstruck but I was very impressed that a doctor took the time to discuss all of this with me.
After our discussion, he told me he was sending me to a new Gastro, which I already mentioned above, and he felt that the barium just missed it - as he said it very possible, and happens fairly frequently. He insists I need biopsies.
Ok, so I'm giving up for the day. My brain is on overload.
How are YOU feeling? Would be nice to hear that you're feeling better
When i was bad with my crohn's the buscupan didn't work for me. it done nothing and i was popping them like sweets!!!! No anti spasmodoic drugs worked, i tried all of them, and i later found out the reason why was because my small bowel was so inflammed nothing could help it.
The thing with crohn's you dont need to have it in your small bowel or your colon, you may have it else where but it hasn't yet hit you bowels and this is why the tests are not showing it up.
At first my original consultant ws stumped with me, even the doctors in the emergency room, and this was because i didnt have blood in my stool therefore they originally ruled out crohn's.
You mentioned headaches.......before i was diagnosed i had very bad headaches, and again this was linked to the crohn's as my immune system was so up the wall, my iron level was low and my organs were inflammed.
The B12 deficiency is a classic sign of crohn's as it is malabsorption in the small intestine.
I suffer alot with joint pain and stiffness which my consultant told me thats part of the deal with crohn's......arthritis type illness, and nothing can be done to stop it or ease it.
For the cramping try peppermint tablets or peppermint water, it really did help me alot and gave me quite abit of relief. and in between the tablets i used to eat mints now and again, this also helped. The cramping will stop as soon as you can get your system under control. Easier said than done i know, but you can do it.
Are you still constipated? If not limit your fibre intake and fruit and veg intake for the next few days, increase the water and start the peppermint tablets. I was constiapted when i limited the fibre, but a few days of the water and other foods getting into my system i was fine. Also to help you go toilet without using laxatives, try drinking prune juice (fresh) or eating two prunes a day. These are really good! I done all of this and it eased my pain whilst i was waiting for treatment. I still had my bad days, but it did work for me. Also the peppermint has a natural laxative in it so this will you go. Be strict with your diet and peppermint tablets, try it every day and make it a routine. Look at it as a MUST do task.
If you go to a chemist and ask for peppermint tablets or health food shop im sure them will have them there.
Salt water is very good for ulcers, can sting but it is really effective. Just becareful not to swallow it......as it will make your stomach worse.
As for the headaches, i would just stick with basic paracetamol every 4 hours as these are the softest pain killer on your gut to take without aggravating it.
It does sound like IBD, but which one is the question !
I really hope this works for you, and please please stick to the food plan and peppermint tablets. MAke it your goal to get on top of this illness. I know its hard when you dont know what you have but you can do it, i have and so can you
Can you not take any time off work? MAybe a week or so just to get rest and try the plan?
As for me.....the side effects are wearing off, the meds are finally working and im feeling tons better.....lots of energy, got my appetite back, big time!!!! still careful what i eat though. Still get pain but not as bad and i can manage it better. Im having a follow up soon with my gastroentrologist, finally find out for sure how bad my bowel is affected by this horrible thing and what the future holds regarding medication, surgery, lifestyle etc.
Well I am so happy that you are feeling better!!! That is great news... I often think of you and how you are doing. I hope the Gastro has some "good" news for you. Let me know what he says when you see him again… I will be keeping you in my thoughts and praying for you not to have to endure the surgery
It's kind of disheartening that this "arthritis" type illness cannot be helped... but I'm thinking that if I can get this - the digestive issues - all under control... it should subside right?
I mentioned to my fiance’s Mom what the doctor said yesterday… and she picked up on the “migratory arthritis”… she said that she has never heard of this… and she suffers from Fibromyalgia… she said it (the migratory arthritis – not my problems) sounds more like Fibro or something similar to. I don’t think I have anything similar to Fibro, but the fact that she has not heard of migratory arthritis kind of struck me as odd. I guess it’s not really arthritis, but more of a joint problem as a result of digestive issues… as you and my doctor have mentioned. Can this affect the back as well?? That pain I don’t understand, but anything is possible I guess. I’ve had guesses made but I was told it is not muscular… so that leaves???
I will try the peppermint tablets... there's a GNC not far from the office, so I think I'll pop over there this evening.
I am still constipated... I don't go unless a take a laxative... I used to go 3-4 times a month, but that has gotten less and less and it seems in the last 2 weeks or so I can't go unless I take a laxative. But I am going to try the more natural approaches (like the prunes that you mentioned) because I don’t want to my body to become dependant on laxatives. Once I get that under control I will try the limited fiber as you mentioned… although I don’t consume much fiber now either, so that shouldn’t be difficult.
Paracetamol… doesn’t sound familiar to me. I guess if I ask the pharmacist they would know though. I know to not take ibuprofen and similar as they can be hard on the system. I was taking Atasol… which is acetaminophen – and still hard I know – but could take those like they were candies and they still have no affect (besides upsetting my stomach more).
Thank you so much for taking the time to post all of that and to offer me some help and support and great advice. You have been such a help to me I don’t even know how to thank you… But it is so greatly appreciated. I think I am going to print this, and that way I can follow it better… I'll forget it all if I don't print it
I think I am going to try and take some time off this summer (a week). I've been trying to bank some hours to do so... but I keep having to use them for hospital and doctor's visits... I want to be able to take some time off while my daughter is out for the summer so I can spend time with her... she is growing so fast it is unbelievable... although I probably still won't get much rest.The biggest problem I have with taking time off is I am the only one in the office. I run the office, keep track of jobs, scheduling, accounting, receivables, payables... I sometimes even babysit the employees lol or at least it feels that way (all men ). So if I'm gone, there is no one here to do my workload... We're a small contracting company... I would feel guilty I think... but I'm going to try and get over that... I'm really doing myself in. We'll see when the boss comes back from his 3 week vacation I know I am finding it more and more difficult everyday to keep up with my work. I used to work in a retail store as assistant manager, and had to leave that, I just couldn't handle it at all, and that was at the onset of my problems... they have strict rules that I just would not be able to follow... and in an eight hour shift you got one 1/2 hour break... I would spend that in the bathroom and I closed the store may a time (or had security stand in) so I could run to the bathroom. But thats a different story. If I had not got this job, I would have been fired for sure. (Or quit... I had alot of sick days from there too).
Hi Sharon... I don't want to be a whiner, but I don't know where else to turn.
I received a call from my GP's office yesterday, she said she has my "appt for Dr. Reddy (gastro) booked but it is further down the road", I was like how much further? She replied " November, but she (the gastro) doesn't have her summer schedule yet so you might receive a call from her office with an appt for July". All I could think was, thank god I am not dying. November is a long ways away, and I don't think I can handle this for that much longer. I could return to my old gastro, but he was useless. He'll just tell me its in my head and I'm too young and shrug me off again
I completely broke down yesterday. I was so sick and in so much pain I could not function at work, but could not leave either. When I finally was able to leave, I didn't have the energy or mental stamina to drive myself. When I got home, I went straight to bed. My fiance came in to comfort me, and first he was like, well you don't eat, so you're not getting any nutrients, and thats your problem, etc, etc, etc. (it's all in my head basically). I started to cry, I explained everything to him, how I can't eat, but I take supplements to try and stay up on nutrients... how at 23 I don't have enough energy to walk the length of myself, how I am in constant pain, my doctor frustrations, just everything, and finally I think he began to understand. He finally started to listen, and got frustrated himself with my doctors.
I just don't know what to do. My whole body feels like it is shutting down on me... and no one can help.
I dont mean to burden you with my problems, as I realize you have more than your fair share, but I just don't know where to turn now. I am so sick of all these tests and no answers, just a puzzled GP.
You're not whining or bothering me im glad to help if i can.
What you are going through is exactly what i was going through. I was literally wasting away, with other organ problems and the doctors didnt seem to care. Even after a few emergency admissions they still sent me home none the wiser. I was scared and really thought my kids wasnt going to have a mum for much longer, I was showing signs of kidney and liver damage, didnt have enough energy to carry my own body weight. And just wanted to sleep all the time.
Try ringing your gastro doctors receptionist and ask her to put you on the cancellation list, this way if anyone cancels they can put you in their place.
Advice wise on the food...............stay off all solid food for the next 24 hours, dont eat anything and just drink water, give your body a break, this is what it needs. It isnt getting time to heal or break down the food that is already in your system. When you re introduce food, start with chicken. I know you say this all what you eat anyway, but give your system a complete break. Have you managed to get the peppermint tablets yet? They will help once they get in your system.
if the pain is unbearable the best thing you can do is go to the emergency room. Tell them how much pain you are in. I didnt need to tell the doctors at the emergency room as they could see it in my face and my body language. As soon as i got there they put me on morphine to ease it.
NEVER NEVER let anyone try telling you it is all in your head, because it isnt. You are ill and you need the doctors to get this sorted out ASAP. If it is going to be quicker going to the emergency room then do that!!
As for your doc saying you are too young, thats rubbish.........i kept being told that i couldnt have crohns because no one in my family has it!!! The thing with digestive issues is that it actually affects a persons concentration level also, i had to step off my degree because of it. It affected my memory. So dont think you are losing it if you cant concentrate or get a bit forgetful.
A quick story for you.................you said you feel like your body is shutting down, heres what happened to me and what made me get emergency help.
I kept thinking that i could battle my way through this until i found out what was wrong with me, everytime i was in pain or being sick i would battle it out until the next day. Then one night the pain came again, this time is got worse, exrucitating pain that i have never experienced before, i was being sick and was literally rolling and rocking on the floor trying to ease it. Eventually i realsied i couldnt do this on my own and i needed help, even if it was only temporary help, so i rang my doc and he immediately called for an ambulance. I ended up in hospital for 9 days.
It is so hard trying to fight something when you dont know what it is, you almost get to the point of wanting to give up. My family stopped me from getting to that point, i knew i needed them and they needed me.
If you feel like you need emergency help, go and get it now. You really need to take time off work because you working whilst you are like this is making your body worse. You need complete rest for at least a few days.
Its long process angela, even now im still not out of the woods, even on medication. Im still fighting it, its bloody horrible and i wish i never had crohns, but i have.
Its difficult trying to raise a family and keep a job down, but get yourself recharged, get your head togther, ring the gastro doc and you will start feleing bettr in yourself. Take as much control of this as you can you're the patient, you're the one who is ill, and you're the one who needs the medical attention.
Keep me updated and take care
You know you can come in here if needed, i will always reply
I will try what you suggest... and hopefully feel better soon.
It's strange, because somedays, I'm like ok, I can handle this on my own...and other days I just collapse...
I will call the gastro's office and ask about getting on a cancellation list... I'm trying to avoid the ER as the last few times I went there I waited for 5 and 6 hours in a waiting room, doubled over in pain... only to be told they can do nothing for me, that I would have to go back to my GP... Nice systems we have eh?
Again Thank you... I only wish to be able to help you one day as you have been helping me. If you ever need an ear, I'm here Even just to vent, as I do often
My elbows and shoulders are acting up today... so I'm finding it hard to type and keep my hand on the mouse... but thats minor stuff I find all this so hard to believe... that a digestive disorder can wreak so much havoc on the system, I mean I KNOW it can, it's just so hard to take in and comprehend that.
I am apparently on a waiting list with the gastro... so hopefully I'll receive a call saying I'm scheduled for June/July
I posted to you in your thread from yesterday... I hope you are feeling better today.