Not quite sure where I stand?

[Luddym]

Hey guys, sorry for a long first post.

I was diagnosed with Crohn's back in 2000, when I dropped a whole load of weight due to stomach pain, and not much other symptoms apart from the odd violently loose bm. Looking back, I think I had a pretty nasty stricture, which seemed to dissappear after the colonoscopy (they got the camera stuck, and had to pretty much forcefully rip it out) as I think they unwittingly widened the stricture.

Since then, I've had the odd flare up of major pain, but these usually lasted no more than 8 hours, then I was back to normal, managing to eat (carefully) as soon as the pain subsided.

On the run up to my last consultant appointment in November, I started to notice an increase in pain, maybe one a week or so, but it just seemed to be getting worse and worse. After I saw my consultant, I had a barium follow through which showed a stricture in the terminal illieum of around 10cm, and that I was fine and should just wait to see my consultant 5 months later (April).

Unfortunately the last 5/6 weeks of my life have been pretty hellish. Major stomach pain convulsion, stomach pain when i walk, some vommiting, constant queesyness, insanely loud stomach noises and general inability to eat anything without having serious stomach pain. My BM's are ranging from non existent to ok, but mainly because I've literally had 3 meals in over a week.

I've been taking co-codamol (OTC) for the last couple of weeks, as I just can't put up with the pain anymore. I know they cause constipation, but the way I figured it, the pain was there before, and if I'm constipated, the fact that I'm only having liquids would help that.

This week, after over a decade of having CD and never making a fuss or contacting the hopsital over than appointment time, I just broke down and had to see if I could do anything/get some stronger meds/see my consultant sooner. I made the call to the gastro nurses (who I was informed by my consultant there 24/7 to help) and am immediately struck with how unimportant I felt. After explaining the pain I was in, and that I had been for weeks, I was immediately told I'd phoned the wrong number and I should phone my consultants secretary (she'd gone home) to book into see him.

She then asked a few questions:

Her : Are you taking painkillers
Me: Yes
Her: Which ones?
Me: Co-codamol.
Her: Then you've probably caused it yourself. Just take paracetamol.
Me: ......
Her: Are your bowel movements regular.
Me: Not really, I did go twice today, but as I havent eaten in 4 days, I can't imagine there's much to come out.
Her: If you've not eaten, you're probably causing it yourself as you are constipated. You need to get some Fybogel.
Me: ..........
Her: What do you have?
Me: Crones Disease.
Her: I'll dig your file out and speak to the consultant, and ring you back tommorow.

Well, that was 3 days ago. Since then, the sharp pain and queesyness have abated slightly, but I'm still in vague pain with sharp pain once every hour or so, which was the same about 3 weeks ago when I ate a slice of toast and it all started again. So I'm scared to even try to eat, as I can't put up with the pain anymore, as all I want to do is scream and shout. I've had no contact from the hospital, and just feel like i'm unimportant, or worse still, they think i'm exaggerating.

The whole situation, especially the fact that my first cry for help in over a decade made me feel like a total idiot, and worthless. The fact that the nurse was giving me advice without even knowing what I had has seriously worried me. The fact that i'm in major pain, and have been told to take paracetamol (when co-codamol weren't working), and the fact that I was told to take fybogel, when I've been told in no uncertain terms (and my old pain diet diary showed I can't really tolerate fiber) to avoid fiber, leaves me in limbo.

I know I might be compacted, but I've had several small, non solid BM's over the last two days, so there's something moving.

Sorry for such a long rant, but can anyone tell me that I'm being a fool here please? I just don't know where I stand right now.

EDIT : I'm currently on 150 mg Azathioprine (Imuran) Daily, and B12 Injections quarterly.

 

[Astra]

Hiya Luddy
and welcome

Shocking behaviour from the nurse!
If this were me I'd get to A&E, only cos this DID happen to me 2 years ago. Same as you, not been the toilet for 6 days, projectile vomiting, worse pain I've ever had. Then the explosive diarrhea came like it had been shot out of a cannon! Classic blockage, even tho I was constipated.
Once in A&E I told them I had Crohn's, turns out I was blocked. It was so bad I was also infected.
My consultant came to visit me after a few days, he told me to never ignore vomiting, sure sign of an obstruction, narrowing or blockage.
And that was my first cry for help since diagnosis too, and it saved my life!
If it gets any worse call an ambulance or get to A&E yourself. I got an ambulance.
Something is active so get it checked just to be on the safe side.
Let us know how you get on,
Joan xxx

 

[Luddym]

Thankyou for your reply Astra.

I think just writing that, and seeing your reply has made me feel a bit better about the situation.

I think you are totally right about my symptoms having been a blockage, but as my symptoms are very very slowly geting a bit better, I hope it's cleared. Looking back, I think I should have just gone to A+E, but thankfully I'm not as bad.......but that may change when I eat.

When you have had a vommiting session, have you ever had pins and needles in your teeth/lips, and/or hands that make them close up a bit?

 

[Astra]

I can't remember, I was in a heap on the bathfloor floor whilst my kids held either my hair up or a bucket to chuck up in!!

Never think that you're being foolish, this disease is such an unpredictable bitch! If it happens again get to A&E, it's your right!
Take care
xx

 

[Grant]

"Take Fybogel"-oh dear.
In 1983 after a bout of severe diarrhea that gave me a fissure, I was in hospital after having the fissure repaired & yep you've guessed it "take fybogel". I told them something wasn't right even after that small op, was I listened to was I hell.
Sometimes the medical profession believes its own hype & its up to us that know our own bodies better than anyone else to put them straight.
Luddym, basically what Astra said. Because obstruction is serious, make a fuss & do whatever you have to to be listened to.
Best Wishes
Grant

 

[Luddym]

Thanks for the replies.

Bit of an update.

Saturday (24/3/2012) was a hellish day for me. I still hadn't heard from the consultants, and had started to have the stomach pain and vomiting. But then I collapsed on the floor with pins and needles in my face, lips and hands, my fingers closed up and stuck so I couldn't move them. Then I got pins and needles through my whole body and started heavy breathing.

After an ambulance was called I ended up in hospital, pumped with anti sickness meds, paracetamol and a tad of morphine, the pain stopped. I had some blood tests done and was told by an on call doctor that as I had crohn's, it was just part of it and he'd check the blood tests and probably send me home.

After several hours the tests came back and I was rushed to a ward to start treatment for serious Potassium deficiency, which levels were apparently quite dangerously low. After a couple of X-Rays, they could find nothing worse than my strictures, and my bowels weren't blocked. But... on Monday night, still in hospital I was still in pain and needed something more than the paracetamol they were adamant would be sufficient. Up comes a little pot of pills which I trustingly took.......... not knowing they were Ibuprofen AND paracetamol. This ended up being my worst night of pain ever, and I thought I was done for.

In the early hours of Tuesday, I had pain that was so unbearable I was screaming in agony whilst being sick. I was given 30mg of Codeine, which made no difference, and then left for 3 hours. Then OraMorph was given eventually, which made no difference (and came back up an hour later), then DiaMorphine injected, which only just eased the pain enough for me to be able to lay down.

It's been a hellish 4/5 days in hospital, but my Potassium levels are now good, I'm on meal replacements, told to avoid solid foods until my next consultant appointment in 3 weeks, now back on prednisolone for 3 weeks, as well as a whole host of other stuff. (Lactulose - stool softener, Lansoprazole - acid regulators, Fresubin - lovely drinks)

Was told by my consultant that I could have Tramadol to help with the pain, then every other Dr I saw at the hospital seemed to disagree with it and think paracetamol would be sufficient, and I got seriously concerned I'd end up back in hospital the minute I was released. But thankfully I got home today (Thursday 29/03/12) with a few pills to tide me over until the pain goes/steroids kick in and I go back for an E-Mri.

Phew, rant over. Sorry if it's rambling, I've had less than 12 hours sleep in five days and can barely see straight! Thanks for the original advice guys, as without it, I have a feeling i may even have tried to get through the pins and needles on my own. So thanks again.

Astra, you are :emot-waycool:

 

[Astra]

PHEW!!
I'm so glad you're ok!
How irresponsible to give ibuprofen to someone with IBD but unfortunately unless they're specialists in the field most docs in A&E don't know this!
And half of em are only 12 anyway! lol
I promise you're gonna feel brill soon with the Pred, I stayed on it for nearly a year and I wouldn't hesitate to go back on it, it saved my life! I loved it, I could climb mountains on it!
Keep in touch, let us know how you are and take care
xxx

 

[littlemissh]

Luddy,
You've had such a rough time, I can't believe how dismissive the gastro nurses were or in fact how outrageous the staff were about your pain relief! Paracetamol!! I would have just told them them that I wasn't having the paracetamol as it wasn't strong enough and I needed something more effective.
Luckily I have never been in the position where I have been given such ridiculously weak analgesia when I've been in pain.

It does sound however that your consultant is on the ball. Did you tell him what the gastro nurses told you? If they had done their job and spoken to the consultant, you could have been put on Pred ASAP and possibly avoided ending up in hospital. Had you tried getting your GP to get you seen quicker or give you some treatment whilst waiting for consultant feedback? If not then it may be worth trying that if your pain kicks off again.

Hopefully with the Pred and liquid diet you will start feeling better soon.
Best of luck.

 

[David]

Wow, if I was there and saw they gave you ibuprofen I probably would have punched someone.

Please keep us updated. And if the issues come back with a vengeance, go back to the ER and let's pray you get a doctor who isn't a moron. There ARE lots of good ones out there so sooner or later you should win the doctor lottery.

*hugs* to you.

 

[Luddym]

Thanks for the replies.

Littlemissh, I actually left an answerphone message on the IBD answer phone on Saturday night when I started getting bad, as I thought they were 24/7, but I was mistaken. I was angry and in a state, and was visited in hospital by someone from that team, and explained everything. Though I was embarrassed at making a fuss, I quickly realized that it could happen to someone else, and have worse consequences.

Apparently no-one was willing to admit to taking the call, but it will be brought up in a meeting today so hopefully no-one else will get the same treatment.

I try not to visit my doctor with issues on Chrohn's as in the past, they haven't been very helpful, so I try to manage things by myself. Maybe not the best idea, but after a while, I kind of got set into a routine of sorting things out. ie, pain, don't eat, constipated and in pain, change diet, etc etc. It's worked for almost a decade, and I think I'm just stubborn now.

 

[Luddym]

Sorry for a late update guys, after being I released from the hospital the I was on Prednisolone 40mg, then told to taper down imediately to 20mg, and I think this is where it all went wrong, as I just kept getting worse and worse at home.

I was re-admitted to hospital on wednesday, 11/4/2012, after the liquid diet failed to work for me. I couldn't even keep water down for days, and eventually ended up being rushed to hospital again. Dehydration, potassium deficiency, saline drip, steroids (100mg IV), all the usual. After several X-Rays, and an MRI, I was still diagnosed with a stricture, and not a blockage, so was given a central line in my neck and fed fresenius kabi nutrition. I was also visited daily by my Gastro consulant and his registrar who were fantastic, as well as dieticians.

On 13/4/2011 I was visited by surgeons and told I would require an operation to remove the stricture, as I've been on steroids in some form for a couple of weeks, they wouldn't help enough to solve the issues I was having. I was also told that the due to the risks of being totally malnourished for so long, that I'd been on steroids and that my entire tract was distended, the safest thing would be to have a direct right hemicolectomy with a stoma, but there was uncertainty if keyhole surgery would be an option, so I would have to wait and see if it would be open, so I signed the forms and tried to get my head around having a stoma.

As no-one thought I had a total blockage, I was put on a list and told they would hope to fit me in on the Monday, long story short, this didn't happen, neither did Tuesday, and I got taken in for the operation on Wednesday. After waking up, I was attached to a PCA morphine machine and got back to the ward. It was only then that I asked about my stoma...only to find out that I'd thankfully had a resection. I was so grateful.

The following day I was visited by the surgeons who explained that although the risks were greater than they were probably happy with, they had managed to connect the bits together by manual sewing, but were a little concerned it wouldn't hold due to the huge disparency in sizes between the sewed part of the bowel. They had to sew it in a T shape apparently, but I'm not sure excatly what that meant. They also seemed very relieved that they had actually not put me off any longer, as I'm sure I was only taken in on Wednesday because I started making a fuss.

I was to wait for wind to ensure that the surgery had been a success, but this took 5 days of slight worry. Pain management was an issue when they took the PCA away. I was given Tramadol 100mg 4 times a day, which barely touched the pain, so also had morphine injections and then oramorph, which helped, but I was still in alot of pain. I was also informed that the longer I took the morphine, the longer it would take to find out that the surgery was a success.

At some point over the weekend, I was visited by a weekend doctor who had apparently been the first one to see one of my x-rays and diagnose that I required the operation. He seemed quite smug at this, which I found odd at first, but it was when he told me that I had had a total blockage that it all sunk in. Up to this point, no-one had been willing to actually tell me that I'd had a full, bonafide, total blockage for at least a week, and I think that this guy was the only person to diagnose it correctly. And looking back, this might have been why the surgeons seemed relieved to have operated, even though I'm sure that I would have been put off longer if I hadn't had made a fuss. (Though I may just reading too much into things.)

Fast forward to today, ten days after the surgery, I was released from the hospital yesterday after a lot of hassle (another story) and I'm on a diet of potatoes, bread, fish, rice crispies and fresubin energy drinks, but I'm not really sure when to introduce new foods as my BM's are actually very solid and few and far between and painful (every 36 hours roughly). I'm still on Tramadol (which is helping the pain now), Calcium tablets, Lanzoprizole, back on the Azathioprine, Nitrofurantoin (for a UTI I got up in hospital) as well as tapering off of the steroids for the next 6 weeks.

All in all, I'm at home recovering, and can't thank the surgeons, gastros, nurses, dieticians etc enough. It wasn't plain sailing, and there were issues along the way (again, another story), but I'm on the mend, and didn't have a stoma. It was an open surgery, but to be honest, it looks so neat that when it's healed, I'm not even sure if the scar will be visible unless you really look for it.

Now I just need to work out when/what food/how to manage my diet going forward.

 

[David]

Wow, that's quite a journey you've had! I'm glad things seem to finally be going your way

Do you know specifically what area of your intestines was removed and how much? This could be important to know. For example, if some of your terminal ileum was removed, you may need to supplement some vitamins.

Here's to your recovery being smooth sailing from here

 

[Luddym]

Hey David,

I've been waiting patiently for my discharge papers to arrive in the post (I was discharged without any of the required discharge procedures) and can now say that I had a small Bowel resection, 15 - 20cm of small Bowel resected of the distal ileum. Though I have to admit, I'm not exactly sure what that means.

 

[Samboi]

Wow Luddy! I'm glad you followed Joan's sage advice to head for the hospital.

It's good that you made a complaint about your treatment by the IBD nurse - hopefully this will improve service delivery for the next poor person who rings up with an emergency.
I made an informal complaint about the doc that was covering for my GI when she was on holidays. He was nothing short of a pig. Since then - his behavior has been exemplary. He needed a compassion reminder.

Hope you're feeling better and on the mend.

 

[David]

That means you had 15-20cm of what is called the "terminal ileum" removed. This is the part of the small intestine that is just before the large intestine. It's the most common place for Crohn's Disease to manifest. It also happens to be where vitamin b12 is absorbed. As such, it's going to be VERY important for you to have your vitamin B12 levels regularly monitored. The body can store up to 5 years of vitamin B12 so, if you're no longer absorbing enough, it may take awhile to show up. But more commonly, it shows up pretty quick and you'll need to supplement. Vitamin B12 deficiency is really bad news, be careful never to let it get anywhere near that point.