Struggling to cope with my IBD

[whereisthenearestbathroom]

Hi everyone,

I have often come across this forum when searching the net for more info on IBD but decided that it would be better that I join, this is my first post. (I'll try and keep my story short!)

I have had digestive issues (mainly diarrhoea and pain) for over 8 years. Originally diagnosed with IBS. In January 2012 I had colonoscopy where the biopsies found "inflammation consistent with Crohn's disease". I saw a wonderful consultant for a while who gave me meds and referred me to a dietician to follow the fodmap diet. After seeing a locum consultant, I was taken off my meds (pentasa, questran) and was discharged from Gastro, as he didn't believe the mild inflammation I had would cause the problems I was having and felt they were no related.

After that I had huge problems and my GP got in touch with the IBD nurse specialist (who again is great). I am back on Pentasa (4g daily) and questran (this is due to having my gallbladder removed in 2006).

I suffer with pain, terrible cramps that double me over and cause vomiting. My IBD Nurse wanted me referred to Gyny for a ex-lap (to check for endometriosis after seeing that this pain coincides with my menstrual cycle) but Gyny did not feel it was a gyny issue. (

Recently I have had a new kind of pain, cramping after I eat but also a continous warm, 'I need the bathroom' feeling across the top of my tummy. Its usually just on the left hand side. The last two weeks I have had continuous diarrhoea, the sort where you absolutely cannot wait (even by my normal standards!) and its just watery. I have no appetite at all and as a result keep getting dizzy & cold. My feet have been so itchy and my arms and legs are so restless its driving me barmy! does anyone else get this?! I reckon its lack of nutrients maybe?

I rang my nurse and got a different nurse who wasn't as sympathetic (the other one appears to be on my side, which is great). She did up my meds though. I'm left feeling very deflated I could cry. And I'm not a cryer! My hubby is having a major op next week, we have two sons and a dog, all three need exercising lol! but I don't have the inclination to do it. I'm not sure how I am going to get through the next couple of months.

I'm due to have another colonoscopy, have been referred back to gastro as a new patient, appt is in Dec. GP is also toying with getting a second opinion from gyny.

I guess my question is, when you are feeling low, how do you get yourself out of it? I appreciate we all have different levels of what gets to us and how much we can take. Usually I just let things slide, but I can't seem to do this at the moment.

 

[Tony H]

welcome to the forum , dont really know what to advise you , but you really are not getting the care that you need imo , try to get your gp to push for a closer date for the colonoscopy as you clearly need one urgently , I am always advised by my consultants team that if I need urgent care to go to the a&e department and you will be admitted to the hospital from there , the idb nurse should not be in that job if she cannot be sympathetic to someone with a problem,
complain her ,
I know nursing is a bloody hard profession to be in but she cant treat patients like that ,

hope you feel better soon .

 

[whereisthenearestbathroom]

Hi Tony H, thank you for replying. I will take your advise and make an appointment with my GP.

I am always standing up for nurses and doctors, especially as most here are fantastic. But when I had to get up the guts to call her and then she pretty muched implied that I must have a bug but I should up my meds just in case, I felt like I had inconvenienced her. I know its not a bug, they feel completely different to a flare. But hey ho, next time I need to ring, I will keep my fingers crossed I get my usual nurse!

Thank you again for your reply, hope all is under control with you.

Oh and beautiful dog in your profile pic!

 

[Tony H]

no problem , I'm coming out of a bad flare at the moment but getting there , only for the laptop and ebooks I would go mad , Joey is the golden boy in the avatar and he keeps me sane (even though he's nuts .

 

[JoshiesMom]

I don't really have any good advice as I'm still relatively new to this... but I just wanted to send you some support. It's frustrating when doctors want to send you to the gyn cause you have female parts, even when you and your gyn are sure the female parts aren't what's complicating things haha. Coming on here has been my new stress relief. It's nice to just be able to see I'm not as alone as I feel.

 

[RowdyRowdy]

WTNB....

My experiences n the hospital were essentially make or break based on the nurses I had. If they were good, my stay was good. If not, then my stay was hellish....

Having a certain diagnosis makes all the difference. Then, when you ask for help or meds, they don't give you a hard time, they believe you when you tell them something. So get as many diagnosis as you can as soon as possible. That's how to avoid shitty care, IMO.

How to get out of the funk? One thing I do is just admit the situation sucks. Just by admitting it, I feel a sense of relief from guilt I might have for not accomplishing one thing or another. It's like giving myself permission to actually be sick. That's what helps me.

 

[whereisthenearestbathroom]

Thank you both. It's so good to be able to chat to people who understand.

I'm feeling a little better, emotionally anyway. As you said, RowdyRowdy, I just had to accept it for what it is, which normally I can do. Now my hubby has had his op I feel like a weight has been lifted too.

Since posting the original post, I have had blood tests which revealed my LFTs were elevated, but not sure how much. They had been increasing slowly over the last few months but apparently it's raised quite dramatically now. Waiting for a liver scan.

Thank you again, it's such a complicated and cruel disease, I'm glad this forum is here

 

[RowdyRowdy]

It really is. We've gotta be there for each other. I'm finding this more true the longer I've had CD.