Long Wait between appointments getting me down!

[Weeze2]

Hello,
This is the second time I've posted on here, and I really need some advice please! I am as yet Undiagnosed but so far I have had a colonoscopy and a small bowl MRI last week. I am on 3mg of Entocort and paracetamol 4 a day, and codeine when needed.
I have got my 2nd appointment with my gastro consultant on 23rd September, and it just seems such a long way off. Over the past couple of weeks I have been going through quite a bad flare up, with new symtoms that I haven't had before. Do I just carry on as I am or try to contact my Dr and let him know? I have been massively bloated for nearly a week, I can't lie on my right side at all as it is way too painful and now my right hip and lower back are hurting constantly. It hurts when I cough, sneeze or laugh and when I even strain a tiny bit on the loo. I have also had some very bad D episodes, as bad as before I started on the medication.
I just feel completely helpless and confused...do I just suck it up and wait for my gastro appointment or try and get some help? Has anyone else had these symtoms? If so what did it end up being?
I am new to all this and would really appreciate some advice.
Thank you so much for any help anyone can offer.

 

[Crohn's gal since 1989]

I would call or email my doctor if I were you. This disease can move very rapidly. My doctor has me call in if anything changes negatively. I may only speak to his medical assistant, but she passes messages along quickly and I usually hear back the same day. You shouldn't have to suck it up and suffer.

Feel better

 

[Lisa]

Yes, it sounds like a call in to the docotor is a good idea. It doesn't sound like you should be suffering for that long. The majority of the pain is on the right side? There could be other causes for that - anything from a stricture, to appendix to kidney issues...not anything that should wait to be seen about!

 

[bozzylozzy]

Weeze2 - sorry to hear about the rough time you are having. I agree with the others and you should get in touch with your doctor.. most NHS consultants have a nurse that works along side them. So maybe you could speak to he nurse first? Either way you need to let them know about your new symptoms.. im sure they'll understand how worried you are

Please let us know how you get.. big hugs to you :hug:

 

[Weeze2]

Thank you everyone for responding. The painis all down my right side, in the pelvic area and over the past 2 weeks has spread into my hip and lower back. I had my appendix out 2 years ago (my specialist now thinks that was my first major flare up as there was nothing wrong with my appendix but it was never investigated) so I know it's not that....has anyone else had this hip pain? Could it be inflammation spreading from somewhere else? I've never had this symtom before.
I rang the IBD helpline number I had been given and a nurse called me back this evening. She couldn't give any advice on what to do about the pain or bloating, but after the bank holiday weekend is going to see if she can get me an ealier gastro appointment.

If anyone has had experience of these symtoms and what it turned out to be I would be interested to hear from them! I am so worried, I have a full time job and I can't take any time off as there is no one to cover, but I imagine worrying is making it worse!

 

[Crohn's gal since 1989]

The only times I've had pain like you are describing

1st time: major inflammation went to ER given IV fluids nd morphine sent home after being watched overnight with cipro and flagyl

2nd time: obstruction NG tube, IV fluids and IV IMURAN/prednisone as I was taking these at the time of the obstruction.

I'd take myself to the ER if it gets worse or doesn't improve. Remember, you could rupture your intestine if it is overtaxed.

Take care of yourself! :hug:

 

[Weeze2]

Thank you, my boyfriend is watching me like a hawk so if anything gets worse he will take me to a&e if I like it or not!
If I do manage to get an earlier gastro appointment does anyone have any advice on good questions to ask my Dr? Like medication i could be asking for? Or tests I could have? This is only my 2nd time seeing him and I don't want to waste time and regret not asking things I later think about! I have already had a colonoscopy and an MRI and I had a calprotectin test and that came back with a score of 249. I am only on entocort at the moment.

Thank you again for your help and support

 

[Crohn's gal since 1989]

I use the calendar on my IPhone/IPad to record how I'm feeling, # of BMs, pain, ER visits, etc. so when I have my GI visit, I give him a accurate synopsis of how I've been feeling. The one thing I've learned is that the more info you can give them, the better they can help you. Your GI/GP are the only people who you can be perfectly candid about your symptoms, etc. hey really want to know all the gory details. I found that if I was feeling well at the end of the month, during my appt, I would forget issues that occurred after the last appt a month earlier. That's why I recommend a calender.

 

[Weeze2]

Thank you, my family have suggested I keep a diary, I just need to start one and stick to keeping it! I am really worried about these new symtoms so I hope my gastro can see me sooner. The pain in my hip is getting worse and if I stretch it really hurts. I can't find any position to sit or sleep in that is even a little bit comfortable. Could this be the start of the arthritis that can come with CD? Or is it more likely to be inflammation or some sort of stricture?

 

[KayleighMeek]

Sorry you are having a horrible time and hopefully they can get the appointment moved up for you soon. As others have said if your symptoms do continue to get worse got the a&e and get seen its not worth suffering through it.
I have enteropathic arthritis which goes along with Crohn's disease and I get it in mainly in my hips, knees and ankles it can be very painful and causes the joints to swell badly. Mention it to your GI as they may want to look into it further to see what could be causing it. Usually once you get a treatment that works well it will get rid of the joint pain for you as well. Hopefully they will be able to get things sorted for you soon x

 

[Weeze2]

My Gastro Dr appointment has been brought forward to this Thursday! I can't believe it, I really thought it would be a couple of weeks! I'm so relieved as this hip/lower back pain is getting worse, and in the last few days I have been passing blood even when not having a BM, and when I do it's an orangey/red colour which has got me a bit worried. I tried a hot water bottle on my back last night but it gave no relief at all, so I'm really hoping my gastro Dr can help.

Has anyone else had these kind of BM symptoms? What does the orangey/red colour mean? I have definitely not eaten any orange food so I know it's not that, and I don't want to panic and think its blood straight away. And why would I be bleeding from my back passage even when I'm not having a BM?

Sorry for all the questions, I'm just a bit new to all this.

 

[bozzylozzy]

That is so good that you were able to get it moved forward so soon!

When you say orangey/red.. is it like a mucous/jelly? If so, then yes I have.
For me it was like an orange jelly with the blood streaked inside.. (I know its yucky and tmi)

Hopefully your gastro can do something asap!
(I had a sigmoidoscopy which they then cauterised the bleeding) xx

 

[Weeze2]

Thank you, i know, I'm so relieved....just hope he can help relieve some of these symptoms as myself and my other half are meant to be going for a short camping trip next week and I want to feel a little bit better for that. We're not risking going abroad, but we both need a break from work and hospital visits and tests.

I had quite a bit of mucus last week, that was kind of yellow in colour, and sometimes i had no BM, just mucus. The BM I have been having this week have been slightly foamy looking and a definite orange/red colour - like a clay colour (sorry for also tmi!). I'm worried this relatively new hip/back pain is linked to this bleeding.

Is there anything I should be asking for or about on Thursday?

 

[Weeze2]

I've got my appointment this afternoon but the pain is getting much worse and is almost all the time. It woke me up at 2am and I didn't get any sleep again until 5ish. I am really worried I have an adhesion or a stricture in my small bowel but I really don't know - has anyone had one of these? What were the symptoms?

Thank you for any help, I'm glad Im seeing my Dr but I'm really nervous too! :S

 

[Weeze2]

Had my appointment today, and I feel a bit deflated but ok. I was terrified before hand and in a lot of pain. My MRI scan has come back totally normal, no inflammation or anything at all! But my Dr has said there must be something wrong otherwise I wouldn't be having all these symptoms, so he isn't giving up!! He has given me anatryptaline to help with the hip/back pain. And he wants another stool sample to see if the level of inflammation is still as high as last time, and if it is he will order a wireless remote endoscopy.
I am relieved that nothing serious was found, but I'm still upset not to have a diagnosis.
Has anyone else had an MRI come back normal but still have an IBD?

 

[KayleighMeek]

I'm sorry you are still suffering but its good the your dr isn't giving up hopefully they can get answers for you soon and get you feeling better. Sorry I don't know about the MRI bit but just wanted to send you my best x