*Phoebe*

Yes, it's your online Aunty Ivy, nagging again.

I saw your post in the politics thread, and you sound thoroughly ill to me.

Have you been able to see a doctor yet, whether a gp or your wonder prof?

Please, Phoebe, start making a noise, and ask for attention before they all go on holidays. It's important to catch this before you develop complications.

Concerned,

Ivy.

bump

Hi Ivy, sorry it’s taken me so long to get back to this thread, I just saw it yesterday…   I’m having impaction problems again. I called the nurse yesterday and she said take movicol / coloxyl… so stopped by the pharmacy on the way home last night and bought some coloxyl… took three tablets instead of the recommended 2 and it still didn’t help me any. I’m getting SO fed up with putting my hand up and not being listened to. Makes me think maybe I’m imagining things?   She said if I get severe pain or start throwing up, go to emergency. I had sharp pain in lower left this morning while I was lying in bed, but nothing ER worthy, just sharp pain that kept coming back but left again eventually – I’m guessing that was from stuff that is stuck.   But I am so uncomfortable. My doc sends me a one line email saying the constipation is routine and not related to CD, take laxatives. I guess because he did a scope and didn’t find obstruction or narrowing. Am I going mad?   I haven’t been to the bathroom for days on end and I feel so uncomfortable I want to cry. In fact I did cry when I talked to my nurse at 7:30 yesterday morning. Surely its not normal to have to man-handle your own body in this way to get things to move along the way they’re supposed to.   Fed up and sick and tired of it all. Impaction is horrible. I thought after it happened last week that would be the end of it – how can I be having impaction when I’m eating yoghurt and mush?? I don’t understand.   Sorry for the rant.. I’m at work and feeling miserable.   P  

ps. I'm very, very, sorry that you asked for help and weren't heard. That happens far too often in the health system.

Crying should have been some sort of indication that you were really struggling and needing some tlc... :-(

pps. I was once scarily close to snapping with pain from an abscess, and not even my GASTRO was listening or paying attention. Nor did my gps, and I am sad to say that I even resorted to seeing several, just in the hope that *someone* would listen and help me. It was actually my gynae who listened, examined, diagnosed, and sent me to hospital and got me on pain meds. Doctors are... *sigh*... odd sometimes.

That would have been in about 2003, I think, soon after my Mum insisted that I come home with her for a while and see my doctors, since I was obviously not coping with uni & living alone in a flat (apart from anything else, I kept running out of food because I had terrible d and couldn't do the shopping).

I was seeing my gastro fortnightly: at the end of one appointment, I said I had a feeling that things were about to get really worse really quickly; my gastro said nah, impossible, things can't get worse; the pain started as soon as I got home. I still can't believe I had an impaction, because I was still going to the toilet and doing my usual Crohns thing the whole time, but even the hospital docs were appalled at how much stuff I had trapped inside me.

From memory, the pain started in the back, around my kidneys, and then used to radiate to the front and travel from left to right. It was bad enough to have me foetal on the floor, moaning, for a fortnight, but, like an idiot, I was being stoic and didn't think it was fair to bother my gastro when he was so busy and I was seeing him in a fortnight anyway.

Suffice it to say he was unimpressed and sent me to hospital as soon as he saw how much pain I was in... and then really upset when he heard I'd been putting up with it for a fortnight.

He gave me a serious lecture on the importance of speaking up for myself, which took me years to fully absorb (and I'm probably still learning to) and I will may up sharing it with you sooner or later, because I can see you behaving in similar ways. That's why I keep nagging you. As I said. I came home in 2003 and am STILL home sick. My theory is that, just like Beth in Little Women, there's only so much a body can take before it will have a hard time regaining full strength again. You really don't do yourself any favours by sitting out serious health issues because you're desperately trying to have a "normal" life. Eventually, you'll lose most of the things you've worked for...

Lactulose. And lots of it. And it made me sick for a long time afterwards, but, in retrospect, that might just have been the Crohn's.

Longer reply latr - plumbers are here.

Without wanting to scare you, though, my Mum had one too, and it was a tumour: imo doctors shouldn't just dismiss them without doing a physical examination.

Dunno, Phoebe. I wasn't saying you had cancer. I was just saying that my completely unqualified feeling is that doctors shouldn't just pass off constipation or impaction - esp in someone with pre-existing health conditions - as normal or routine without actually examining them. Especially if it's Friday, you're about to disappear for Saturday and Sunday, and they're on the phone first thing in the morning and crying.

But I'm not a doctor. I'm just a human being (she says, cynically, being a bit grumpy herself).

Ooh, good timing: you've just come online

This is ridiculous. Phoebe, do they know you're not eating properly, and haven't for at least a week (more?) now? You can't keep doing this until late January. Please do find a gp, Phoebe. Please.

:-(.

I hope I'm wrong and that this really is routine and easily managed, but I think that even discomfort and not eating should be dealt with a bit more... hmmmm... urgently? ... than the doc and nurse are right now.

Plus, it's nearly Christmas and it's not convenient for them to be bothered. My no-pay-attention-to-the-abscess drama happened around Easter; Mum's "impaction" happened around Christmas, and, each time, unless you happen to be lucky enough to have an appt with my spectacularly good gynae, nobody really wants to know about a medical drama right before a public holiday, esp as hospitals will be starting to close down beds just now.

I think you need a gp, Phoebe. You actually need an advocate, but I don't know if you have one there. He's not a medical professional, but can your bf ring the specialist on your behalf, expressing concern? Some blokes tend to listen more to other blokes than they do to females...

ps. Phoebe, when are you due for your Rem reassessment?

Felt the need to butt in to this conversation. Please forgive me if I am out of line.

Phoebe, I completely agree that you need to get the GI to listen to you.

My son was 10 when he was diagnosed with CD. His initial presentation was constipation that did not respond to treatment. By the time he was diagnosed, nearly a year after I first sought medical care for him, he was mildly anemic and had elevated inflammatory markers.

Through various CD treatments, my son continued to have severe constipation. He was hospitalized for clean out 6 times in one year. The last hospitalization he was obstipated - no intestinal movement at all - despite 5 doses a day of Miralax, a high fiber diet and 2 doses a day of laxatives.

It took 7 days of continuous NG tube administered GoLytely to get him cleaned out enough he could come home that time.

Despite the constipation, continuing mild abnormalities in my son's labs, and a lack of growth, the local GI decided my son was in remission.

Therefore, he concluded, the explanation for my son's constipation must be a severe motility problem.

He then proceeded to put my son through several incredibly invasive GI procedures in an attempt to find the motility disorder.

Every single test he ran showed "normal" motility.

The GI finally told me he wanted my son to have surgery to place an ostomy appliance in his cecum so he could flush his colon daily in order to pass his stool. The GI said this would be more "convenient" for everyone.

I refused to agree to this plan. All along I had been saying that I didn't think my son was in remission.

At this point I took my son to one of the oldest and most respected ped GI's in the US. He runs a clinic that specializes in treating pediatric motility disorders particularly constipation.

To make a long story short, my son was not anywhere near in remission. A SBFT (the local GI had never ordered one) showed that my son had extensive severe inflammation and stricturing in his small bowel. I fired our local GI and switched to one that's 100 miles away but who actually listens to me and pays attention.

Once my son got into remission, thanks to Humira, he no longer had constipation. None. No problem at all.

I realize that our experience may not apply to your situation but I wanted to share it in case it helped you to get more forceful with your current GI or to seek a 2nd opinion immediately.