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Advice / reassurance . . .

advice / reassurance . . .

I've tried writing this several times and I get halfway and think, man, what am I doing, i'm not that bad, it'll get better . . . . . still advice/ reassurance would be cool :)
Okies, brief history, I'm 25, was diagnosed initially at 16 with UC, took mesalazine for a few years but came off it cos I was so well. Had a flare at age 20 and got re-referred to GI docs, had a white cell scan like 4 months after a flare up, it, suprisingly showed nothing. Changed my consultant, got a diagnosis of Crohns about 4 years ago but have been really well, a couple of flares fixed with 30mg Pred. Happy days!
Then came December 2010. I got really stressed with loads of things happening and started to feel unwell so changed my diet to 'good only' foods and tried rectal pred foam stuff which usually kills the flare. Eventually got pred from my GP a couple days before Christmas after a bit of a fight. Symptoms-pain, distended tummy, bleeding like 10-15 times a day (but no poo), mucus, tiredness . . . . I started myself on a liquid only diet, knowing the less I bombarded my tummy, the better. The week after new year I managed to get an appt to see the Consultant, he started me on higher dose pred and arranged for me to go into hospital for IV hydrocortisone. I spent a week in and had x-rays which showed 'masses' in my abdomen, had a flexi-sig which they couldn't get in further than 80 cm due to swelling. My consultant is fixated by this idea that I have some irritable bowel symptoms too and seems to shrug everything off as that . . .
I've been out of hospital 12 days now and starting to reduce the pred as instructed. My symptoms are just the same as they were at new year, i'm less tired, but then I'm not going to work again yet. The specialist nurse just suggested I stop eating and take ensure drinks instead and she's going to try to get an appt with the consultant for me.
Now, my bloods are normal, they always are, but the fact that they couldn't get a scope in kinda suggests theres a problem . . . . am I wrong to want them to have a proper look inside? Is a flexi-sig enough, should they be looking deeper? There is clearly an awful lot of inflammation but they don't seem too bothered about it!
The 'masses' in my x-ray are apparently just poo that can't get out, hello, if i'm so inflamed it can't get out, thats probably why I'm having the problems??
I see my insides as one long tunnel, if it gets blocked, it's going to hurt right, and they can't get in with a scope, what makes them think anything can get out?
I'm feeling a little abandoned by the docs, they just sent me home to manage myself and, well, I'm not any better than before so very frustrated!
Any suggestions about what I should be asking for in terms of tests/treatments? I don't want to cause the docs trouble, but at the same time, theres only so much blood one can lose . . . . .

Ooops, that was kinda long, hoping it makes sense tho :)
Now
 
I'd say you're in a position to justly give the docs trouble. It seems ridiculous to me that they're shrugging that off rather than really trying to get a good grasp of what's going on. Raise hell until you're satisfied with them. YOU'RE the customer, after all. If your current doctors don't want to do more to figure things out, don't be afraid to seek another opinion. I know it can be a huge hassle, but it may be necessary. Have they done a proper colonoscopy? If not, ask why not.

As you said, the liquid diet will probably be helpful for the time being. I'd inquire about iron supplements, as well. They can be rough on your stomach, but it might be worth it depending on how your hematocrit/hemoglobin is.

Best of luck in getting everything sorted out! Keep us updated.
 
It's not a simple thing getting good service from doctors. Something to ponder, like in everything some doctors are better than others.

Push them for all your worth. Change doctors if you have too. YOu will see a great difference when you have a good doctor.

You have nothing to loose so push
 

Astra

Moderator
What am I doing? I'm not that bad!

Are you kidding? You think bleeding without poo isn't bad? You think having a mass of poo stuck in your bowel isn't bad?
For a start, don't let the docs fob you off with IBS, you DO NOT bleed with IBS!
There's defo something wrong, you should insist with the docs for more tests, did you have a colonoscopy? Never mind about causing trouble! They're on a bomb of a wage, get in there and scream at them! They're not Gods! Give 'em Hell!
How about you don't reduce the Pred just yet? Give it a few more weeks at a higher dose, until you get to see someone.
besta luck to you
Joan xxx
 
This sounds very much the position I was in before Christmas with the Doctors sending me away with a come back in three months.I read things from these lovely people on here who are all suffering the same thing although with different symptoms which is good because thats how you learn.I have been seeing my GP every week virtually since this was diagnosed in 2008,had two ops in 2009 and going to the hospital either with two monthly appts or three.I go to hospital sometimes messing myself being sick,I wont go into any more grotty bits but this time I read everything I could on here made lists went to my appointment and I refused to move until my questions were answered and I came away with something positive happening.I now feel I am getting somewhere cause at the end of the day these people are not god and we did not ask for this damn thing.
I am now on medication,I know exactly what is going on inside my body and I am going for blood tests weekly and will see my Doc at hospital for two weekly appts.I was'nt rude just firm.Good luck with it all.
 
Bloods being normal doesn't mean much. Studies have shown with crohn's that somewhere between 10-30% (depends on which study) of people with active disease have normal inflammatory markers (esr and crp which is what gastro people obsess about). My inflamm markers have always been normal...my other bloods haven't and my consultant has said he will go with how I feel and my symptoms as he cannot rely on my inflammatory markers.here are many others on here the same as me.

If you have so much stool in your bowel did you ask why they have not considered an enema or laxative as you can get overflow diarrhoea which won't be helping your symptoms. This doesn't cause you to pass blood so is only part of your problem but it may help reduce the number of bm's.
 
Oh, they gave me laxatives when I was in hospital, then obsessed about how many times I was going to the toilet. Oh, then the bleeding seemed to get a bit better, but I guess if it's moving through me so damned fast, it probably won't cause too much of a problem??
So I've been on ensure only for 48 hours, I was told to have 4 in a 24 hour period, but the bottle says 6-8 so I'm going with that. I am hungry, feel really sick and, guess what, bleeding more than on solid food. Safe to say my body doesn't like anything at the moment!!
I've got an appointment with the IBD nurse tomorrow as the consultant is on leave this week, she seems pretty helpful.
I think I need a colonoscopy not just a flexi-sig, maybe I need one of them little camera right through me things I've read about. It seems sensible to me to figure out what the problem is and where the problem is before we try to treat it??
I'm going in armed with information and questions about treatments etc etc in the hope that something positive and happy will happen. I work in the hospital so they are used to me turning up with academic journals and stuff I've read :)
Thankyou all for your help, I will update on progress!!
 
Monkey

With the problems you describe DO NOT let them fob you off.Get EVERY test done to find out what is going on in your intenstines.
I've had 2 resections because they got it wrong - don't let that happen to you..........keep going back......change Dr's.......you must find out what is going on!

e13 boy Serovera AMP Loperamide(due to short bowel)
21 yrs of CD 9 operations
Failed meds Steroids,Azathioprine,6mp,pentasa
 
Bloods being normal doesn't mean much. Studies have shown with crohn's that somewhere between 10-30% (depends on which study) of people with active disease have normal inflammatory markers (esr and crp which is what gastro people obsess about). My inflamm markers have always been normal...my other bloods haven't and my consultant has said he will go with how I feel and my symptoms as he cannot rely on my inflammatory markers.here are many others on here the same as me.

If you have so much stool in your bowel did you ask why they have not considered an enema or laxative as you can get overflow diarrhoea which won't be helping your symptoms. This doesn't cause you to pass blood so is only part of your problem but it may help reduce the number of bm's.
What an excellent post re bloods.
3 weeks before i had a right sided hemi colectomy i was told in A&E my blood showed no inflammation & sent home.
HUH!!!

e13 boy Serovera AMP Loperamide(due to short bowel)
21 yrs of CD 9 operations
Failed meds Steroids,Azathioprine,6mp,Pentasa
 
You have a diagnosis of Crohn's don't you? Clearly your current treatment is not effective. Have they changed it recently or are they planning on doing so? What are you on currently?
 
Yes, I have a diagnosis of crohns. I'm on no treatment, haven't been for years because the flare ups were so infrequent it was better to just attack me with steroids when I got one than try to prevent them.
I was discharged from the hospital with enough pred for 10 days. Thats it. No discussions about further treatments, no nothing.
I'm hoping the nurse will be able to discuss this tomorrow :)
 
I am sure she will , sounds like you need increased pred + maintenance treatment. Good luck for tomorrow, I'm sure it will be fine and hopefully you'll soon be on the mend.
 
Update-
The nurse was nice. We discussed treatment options. She can't start me on any of them tho. Think once we get this flare under control i'm going to have to take an immunosupressant, apparently I'm not suitable for the biologic therapies.
She seemed quite concerned that I might have an abcess, not heard of this one before, and is sending me for an ultrasound, that could take weeks to come through tho :( I'm also getting an MRI type thing for my small bowel. She is going to speak to the doc about baruim meal/white cell labelling to see which might be better. When i've stopped flaring, I'm getting a colonoscopy too-seems a little bizarre, waiting til I'm better??
In the meantime, I've been given some 5ASA (which has failed in the past) to try.
Hmm. Not totally satisfied, but will see what comes of her chats with the consultant on monday.
 
Waiting weeks for an ultrasound? That's terrible. It should be classed as 'urgent' and you should be seen within 2 weeks. It's not like it's some complicated, expensive piece of kit, that needs specialist technicians!

As for the colonoscopy, they said something similar to me, because the bowel prep can itself cause problems (on the Moviprep it even says 'do not take if you are in an active flare of an IBD'), they would rather wait for the pred to start working before they do a scope. In my case, they knew I was inflamed from CTs, they just wanted biopsies. In your case, since they couldn't get a flexi sig in, maybe they're waiting for the swelling to reduce enough for them to be sure of getting a scope in?
 
I'm already on the movicol because of some 'masses' seen on my x-ray. I know it says don't take of you have IBD but the consultant gave it me . . . . what can I do??
As for the ultrasound, yeah, I just gotta wait for that one. I'm a little concerned by the word abcess, don't they burst sometimes??
 
Sounds awful. I'm sorry you are going through this. Have you every tried Remicade, Cimzia, or Humira? They work great for most people!
 
Nope, I've not had any meds, I've been lucky and never needed them!

I have some new symptoms . . . . I'm not eating, feeling nauseous and have actually been sick a few times, feeling kinda acidy in my throat. Also I'm bleeding more and my poop has turned black. . . . should I be concerned or are these just side effects of the 5ASA's??
 
you should get it all checked out especially if your symptoms are changing.better to be safe than sorry.I always see GP or go to AE if bleeding.They normally do blood tests and stuff.If it side effects still best to check even if it puts your mind at rest.good luck let us know how it's going.
 
I've been to the GP today, she's signed me off work for 4 weeks . . . . not my choice, it's what she recommends given my symptoms. Shes really annoyed the Docs haven't seen me, or even booked me an appointment as a follow up after discharge.
I've got an ultrasound booked. A week on friday. Yes, that is 2 weeks after referral. I'm still vomiting, still constant nausea. Feels like someone in kneeling on my tummy, still distended-even tho i'm not eating, still bleeding, more and more as the days pass.
Needless to say, I've set my mum off with a phone number for the nurse. This really isn't on. Maybe I just expect too much from the NHS??
There, that was a mild rant.
 
That's awful. I've been there. My stomach gets so distended I look pregnant (wish it was just that)! I believe the reason is that there is so much swelling in your intestine. I too get very nauseaus, try phenergan, or zofran, your Dr. should prescribe it no questions asked.
I had a CT last week, and had to wait a week for mine, they don't seem to get in a hurry! If you get in too much pain I would go to the ER, they will surely do a CT scan, especially given the bleeding. Keep us posted!
 
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