Every day is a struggle :-(

[CatherineM]

Hi, I'm new to this. I'm 24 with 2 young kids and an amazing partner. On and off for years iv been having a lot of diarrhea and pain but didn't think anything of it. It all got worse at Christmas last year. I was ill, in a lot of pain bur didn't want to let the kids down on Xmas day. On boxing day I had to go up to hospital. I had awful urgent diarrhea and severe stomach and back pain. I was so embarrassed with the urgency of the diarrhea. Anyway I was sent to xray and given strong pain killers, after that I was sent to a ward. Got kept in for 6 days, my liver function tests were abnormal, vomiting bile too. I got an ultrasound and MRI scan which showed nothing. I got my gallbladder out 3 years ago so they thought it was related to that. I was then sent home to wait for an appointment for ct scan which showed nothing.

I then had to get an endoscopy as the doctors were growing concerned about my liver. That test showed a lot of bile in the stomach. But that's all.

In July I ended up back in hospital for a few days. Not once did they ever do a stool sample. They were convinced the problem was to do with my liver, bile ducts, etc. But after another ct there was nothing.

Finally last Thursday I saw the consultant. Few weeks before that appointment I put a stool sample into the doctors. The consultant told me I have bile reflux. But my sample was a very positive for inflammation in the gut. Iv to have a colonoscopy done which I'm scared for. I'm so scared of being sedated, I had the endoscopy with throat spray only cause I was that scared. He is convinced I have inflammatory bowel disease, probably crohns as my gran has it.

I just can't cope just now, I'm full time at college with a family. Every morning I panic, I'm so scared when I leave the house because exertions my stomach gets sore then I panic that il need a toilet. I'm so embarrassed to say that a few weeks ago I got a sudden need for the toilet. I didn't make it to the toilet, just tge front door. No1 new but it was so embarrassing, I was in tears. The pain every day is unbearable, my back can get sore, same with my legs, also struggle to sleep. Sometimes it's the constipation that's bad. It's just a mixture of everything and having bile reflux doesnt help How does everyone else cope? Please tell me it gets easier.

I please need some advice, support, anything to help me through this. I speak to my partner and mum but they don't get it, they just say aw don't worry it will be fine.

 

[deb123]

Hi Catherine M,

So sad to hear that you are having a tough time. Ive had Crohns since my teens, but was diagnosed officially at 21. I totally relate to all you described. It will get better once you are diagnosed, and they get you on medication for your condition.

The only advice i can give you at the moment is to try a liquid diet, soups, juices, and those specialist shakes you can buy to give your gut a rest. Has your GP suggested anything to help you in the mean time?

I know somedays it feels as though it will never end, but it will get better, stay strong and positive. :hug:

 

[CatherineM]

Thank u for taking the time to reply. I'm glad iv found a place where people understand. I have a bag full of things, anti sickness, strong painkillers, stuff for diarrhea, anti inflammatory, also mebeverine for spasms and something for my bile reflux. Iv always known I had something like IBD but thought it was something else because of what doctors say. When I was 15 they said I had IBS so I stuck with that. Iv got a bag full of medicines and got told to tale whatever I need when I need it. It's difficult cause I'm treating the bile reflux but the IBD brings me down.

I just hope the colonoscopy is soon, even though I'm in complete fear of sedation! I just don't know what to expect. All the doctor said is because of the stool sample he believes I have IBD but didn't tell me what to do while I wait for the diagnosis or anything. Just feel so down, usually I deal with illness well but this illness is winning lol xx

 

[Earnellzwifey]

Hi Catherine and welcome to the forum!

As for the scope you can get it done with a mild sedation. You will be asleep but it is not as strong as what they use when doing major surgery. I hope that helps to ease the tension. You can also tell them your fear and they can give you something to help you relax (like you need more meds) :yfaint:

I have a question about you pain meds. are they NSAID based like ibuprofen or alieve. these are big no no's for IBD sufferers, it only makes things worse. If they are ask you dr to change you to one that is tylenol based like lortab.

I agree with Deb123 that once you have a answer in hand just having that stress off your back can help you to feel better and once a dx is confirmed they can try and get you on the proper meds. You might have to start out with prenisone for a while to relive the inital inflamation. IMHO the side effects are worth the benefits it can bring.

I feel for you being in school and having 2 small children I know that has to be a real challenge. There are many here with small kids that hopefully will give you advice on how to cope on your down days.

I know you where embarassed when you feel short of the bathroom butit happens to the best of us, even the veteran CD'ers have accidents sometime.

I was on my home from work and thought it was gas and to my suprise it was not had to ride 30 mins in the winter with the windows down so I would not pass out from the smell.:ylol: At that time I was in tears as well but now I look back and laugh.

Post and read around as much as your want and there is nothing you can say that would embarass anyone here. If it has to do with poo oo: we are the people for you! :thumleft:

 

[CatherineM]

Thank you for your reply. It's cocodamol I have for pain relief, also tramadol for when the pains really bad but I try to avoid that. I'm taking domperidone, omeprazole, mebeverine, sulcrafate, imodium, anti inflammatory and other things. Having bile reflux is just an extra problem, the 2 illnesses seem to battle with each other and come and the same time.

I can't wait for my diagnosis, I understand it takes time but just wish it didn't lol. Also preparing myself for them to not find anything (even though tests are showing a very positive for inflammation.

If the colonoscopy comes back that I have IBD do they need to do other tests? Id b absolutely fine getting put to sleep for the colonoscopy, don't no why I'm so scared of sedation. When I was in for an operation I remember getting put to sleep. As the stuff was given to me I remember tears going down my cheeks and started panicking. Then when I woke up I panicked and had to keep oxygen on for a while. Think because I no I won't be completely knocked out I will panic.

I just dont know what to expect, no1 has spoke to me about my bile reflux, colonoscopy or IBD. Just want it to be over Or even controlled. But I do understand I can't have it controlled till we get a diagnosis, just frustrated xx

 

[Earnellzwifey]

No problem helping when I can. I am just paying it forward for all the help these guys have already given me.

As far as further test go I guess that will be up to your dr. I was dx by blood work and and waiting on my biopsies results from my scope. I do know that my dr said if my scope did not show anything then i might have to the pill cam. But that seems to be off the table now.

I am sorry but I am not very familiar with you meds other than the Tramadol. I am on that myself but for me that is my go to when i am in mild pain. I have lortab or percocet for harder times. I also take omeprazole and have taken Imodium before. the only one that still has me a little concerned is the one you labeled anti-inflammatory.

sending hugs your way :ghug:

 

[Earnellzwifey]

oh yeah i wanted to add have you have your vitamin levels checked. many of us are deficient in may different ones and that can wreck havoc on your body. just look at my signature and you will see all the supplements I have to take.

 

[CatherineM]

I was given an anti inflammatory because with the bile reflux there was too much bile in my stomach which cause the stomach walls to be red and inflamed. But I stopped taking them a few weeks ago, I'm sticking mostly to my bile reflux medications, pain killers, omeprazole and domperidone (anti sickness).

Just seems as though they have chucked a load of medicines at me and i don't really no what to do with them to be honest, I just take what I feel I need when I need it.

The consultant said he is almost certain it's IBD because there's definitely inflammation in the gut, and he's positive the the colonoscopy and biopsies will be my answer. Just need to wait for my appointment.

I'm so glad iv found this forum, I thought I was just a drama queen or over reacting but I see now that so many people r the same or have it worse than I do.
I always thought my tiredness, lightheadedness and joint pain was just me but iv noticed some other people at the same. There's so many symptoms with this nasty illness xx