So Frustrated.....

[stylinmama]

Hello everyone, I just joined today . I've been sick for about 3 years and diagnosed last year (sort of and finally!) with Crohns. The reason I say sort of diagnosed with Crohns is b/c I can't take any of the prep offerd for a colonoscopy. I can manage to swallow the stuff....but within a few minutes it's all coming back up. I have had a barium enema that showed no irregularities to speak of and that's why they think it's Crohns I guess. Anyway, I was put on Cipro and Flagyl and i'm allergic to these so I was then put on prednisone and Asacol and that worked until i decided to have another baby. I came of the meds to get pregnant and had a perfect pregnancy. No symptoms what so ever. Then I had my son and was good for about 2 months. I was't producing enough milks so i decided to take some herbs to see if that would help. WELL, I didn't make anymore milk and the herbs brought on a flare....a flare that's been going on now for a little over 5 months. As of today the prednisone does nothing for me anymore and the Asacol seems to make things worse (about an hour after i take it i''m so sick). The GI won't see me since I can't take the prep for the colonoscopy, and at the time when they wanted me to take the test I hadn't eaten ANYTHING for over 2 weeks, but they said that wasn't good enough to be able to have the colonoscoy done. As of taoday it's been 3 days since i've eaten and I can't find anyone to help . If you have any suggestions for prep that I could maybe handle I would really appreciate it. I've tried Fleet and Pico salax and both came right back up.


P.S. I have no interest in being pregnant for the rest of my life, even though that seems to be the only thing that works for me haha.

 

[Jennifer]

I'm confused as to why you can't take the prep. Is it the taste or can you not keep anything down in general?

Before my surgery I had to drink two gallons of this stuff that was just simply rancid and there was no way I was going to be able to drink it all. So they gave me the choice of having a tube put down my nose where the liquid goes directly into your stomach. Getting the tube down there is the hard part but once its in there you can relax and just go to the bathroom when you need to. No more drinking nasty stuff. I'm curious if you could do that. I don't see why the GI doc would say no and just let you wither and die because they can't get the test done.

But if you're just vomiting up everything, even regular food and drink, then perhaps there's some sort of blockage and there has to be some other test they can do such as maybe a CT scan. And if you get to the point of not being able to hold down liquids as well, then I'd suggest going to the ER.

If you can, it'd be best to find another GI. Doesn't make sense to show someone the door because they're vomiting.

I'm sorry you're going through this.

 

[stylinmama]

Oh and when I asked if there was something else I could take or something else I could do to be able to take the test the receptioist or nurse at the front desk told me that there were no other options and if i couldn't keep the prep down then i couldn't have the test done. After reading some of the posts here isn't it possible for them to 'see' my bowel with a CT or MRI ? I mean I understand that a colonoscopy would be best, but would a CT or MRI help at least a little?

 

[Jennifer]

I'm sorry if I seem bitter I'm just so darn hungry! lol

Why do you think my name is Crabby? This disease makes everyone bitter. No worries there.

If your GI thinks that you're wasting his time, then really he's just wasting your time. I hope you can find a new one soon. Maybe contact your GP and see if they know someone else they could send you too.

To me its starting to sound like either the ingredient in the liquid or the quantity is making you vomit (and if its the quantity then it could still be some sort of blockage even if you're holding down food and other liquids). I knew someone with an ulcer right at the base of their esophagus where it connected to the stomach and they could only swallow small quantities of food and liquid, otherwise it would come back up. They didn't have crohns but what if you have something similar? I hope not.

Sadly if its the ingredients in the liquid that are making you vomit, I don't know of another one you could try. Did you ever mix it with 7UP or something else that's clear?

 

[Jennifer]

Oh and when I asked if there was something else I could take or something else I could do to be able to take the test the receptioist or nurse at the front desk told me that there were no other options and if i couldn't keep the prep down then i couldn't have the test done. After reading some of the posts here isn't it possible for them to 'see' my bowel with a CT or MRI ? I mean I understand that a colonoscopy would be best, but would a CT or MRI help at least a little?

Yes. Check this link out. It talks about all the tests that can be done.
http://www.ccfa.org/info/about/diagnose

 

[Lisa]

I'm with the thought that you may want to find a new Dr.....OR - see if you can try a different prep - if you are in the States - have you heard of the Miralax prep? You get Miralax powder and mix it with gatorade (make sure it is COLD!).....definitely no where near as bad as the go-lytely (which made me throw up after a fedw glasses).....

There is always a sigmoidoscopy too - you don't need to really prep for that - at leat I didn't the last time I had one done on short notice (years ago now).......

Geeze....there are other tests - CT, endo, your Dr should be more aggressive - or at least NOT tell you are throwing up on purpose! Why would you go to him in the first place if you didn't want something done?????

 

[Dexky]

Why would you go to him in the first place if you didn't want something done?????

Good point Paso!! Welcome Stylin.

 

[Keona]

ditto. I'd get a new doctor. Accusing you of bringing on your own symptoms? I'd be a little more than bitter...haha

 

[stylinmama]

Thank you all so much! I've done a little research online and am going to try to switch my specialist as soon as I can I think I may have found one that might work out for me. I looked on a website where ppl rate their Dr's so hopefully he is all they say he is I seriously hope someone can help...the first time i was this sick i lost 11lbs in about 2 weeks...not that i mind being smaller, but i was only 130lbs when i got sick at least this time around I still have all that baby fat

 

[Regular Joe]

Hello and welcome,

Quite a story. We could probably help you a little more if we knew a little more about you...like are you in the US, Canada, or Europe?

I've used "MoviPrep" which is by prescription, and that was the far most effective for me. I didn't have any problems, and the "lead time" of fasting is pretty brief compared to others. I've also used "Miralax" together with "Delcolax" for my first colonoscopy. That was pretty unpleasant. I wouldn't want to do that again.

CT's and MRI's are helpful, but a colonoscopy is probably the best and most accurate method to help in the diagnosis of Crohn's disease located in the ileum and/or large colon...which would encompass abouut 95% of Crohn's disease cases. Also, here in the states, we need a physician to order a CT or MRI which is usually a gastroenterologist (GI). If you have Crohn's disease, it is best to find a specialist that you feel comfortable with who knows this disease and it's symptoms.

We are here to help...the more information you can give, the easier it may be to get you some clearer responses.

Welcome and good luck,
Joe

 

[stylinmama]

Hello and thank you for the welcome! Today I went to see a Dr. as i was sooooo hungry lol. Anyway, she prescribed me more prednisone and told me I need a GI (really???lol) but since she isn't my family Dr. and won't be my family Dr. (it was a walk in clinic) she wouldn't give me a referal to one so I could get help.

The problem now is that I live in a small town and the nearest city is an hour and half away and we used to have Dr's here but they quit and left Now I've been trying to just find one that would take me and my family, but I've been having no luck. So far I've called 14 GPs in the nearest city and none are taking new patients.....tomorrow I will try another city that is a little farther and hopefully I'll find one there.....and hopefully we'll get along

But back to the prednisone, I've been on this dose before I start with 50mg then taper, but this time I taper very fast...50mg for 7 days, then reduce by 5mg per day after the 7 days of 50mg. I've never tapered that fast before and even on a slow taper (50mg for 10 days, reduce 5mg every 7 days) at 30mg I'm sick. Has anyone done a fast taper like the one I'm on now? Has it worked out for you? I'm a little more than scared to reduce as fast as she wants me too, and when I voiced my concern she just seemed irritated with me and mumbled something I can't remember and left the room. Why do I seem to have the worst luck with Dr's???? hahaha

Oh, and this time the 50mg made me crazy almost instantly, within an hour I was shaking and had a panic attack. It made me crazy before, but it usually took a couple days And it seems I can eat boiled eggs!! YAY!!! food....even if i don't really like eggs, I'm so happy i can eat at least something!

P.S. Prednisone doesn't really help me with the bathroom trips....only with the pain.

 

[Astra]

Hi Stylin

Listen, I'm a bit concerned here, cos a) with the best will in the world, these people are NOT specialists in IBD and
b) that is a very quick taper, and one which I wouldn't even attempt, it is a very dangerous drug, you could end up with massive cortisol/adrenal problems, I believe the norm is - to stay on a high dose for at least a month then taper by 5mg PER WEEK not day!
I might be wrong, can someone else add??

'Patients are often told not to stop taking prednisone suddenly. The dose of prednisone must be tapered gradually to allow the adrenal glands, which have atrophied, time to recover. Otherwise, the patient could put themselves in jeopardy of entering into adrenal crisis (e.g., nausea, vomiting, shock).'

lotsa luv
Joan xxx

 

[stylinmama]

Well, I guess I'm back to the Dr. today I knew that taper wasn't right and I should have fought harder for her to listen to me. Maybe I'll see yet another different Dr lol.

 

[Astra]

Ok good luck with it
xxx

 

[KPawlak]

As the medical education director for an independent imaging center, I thought I might offer some information that may be helpful as it relates to imaging options for Crohn's disease sufferers.

Computed tomography (CT) is currently the most commonly used imaging technique for the noninvasive evaluation of complications associated with Crohn's disease and for evaluating disease recurrence. There is, however, mounting concern regarding a patient’s exposure to multiple doses of ionizing radiation, which is associated with CT and the long term adverse effects of such repeated exposure over a patient’s lifetime.

The potential risks from ionizing radiation exposure associated with CT have led to the development of magnetic resonance (MR) techniques used for the evaluation of Crohn’s disease. MR enterography is able to safely and noninvasively meet the imaging needs of patients with Crohn’s disease without exposing them to ionizing radiation.

MR enterography is an effective tool to evaluate and guide the treatment of patients with Crohn’s disease. It is a noninvasive imaging technique that yields high contrast images of intestinal inflammation, abscesses and fistulas in the small bowel. It utilizes dynamic image acquisition following the administration of intravenous contrast to provide information about the time course of bowel wall enhancement. This serial imaging of bowel wall enhancement over time may help to distinguish active disease from inactive disease; such dynamic imaging is not routinely performed with CT because of the radiation exposure associated with serial image acquisition. As a result, MR enterography has been shown to be superior to CT for differentiating between acute and chronic inflammation in areas of the diseased bowel, which is critical for deciding on medical vs. surgical treatment. Recent studies comparing CT enterography and MR enterography have demonstrated that both techniques are excellent at detecting features associated with Crohn’s disease and that the differences in sensitivity and specificity between the two techniques were not statistically significant.

MR enterography is an excellent and appropriate imaging option for patients with Crohn’s disease, particularly those who are younger, who require frequent follow-up for symptom exacerbation, to assess their treatment response and monitor disease progression, all without exposure to potentially harmful radiation.

Whether you are located in Canada or the US, you would need a physician's referral (either specialist or Gp) to obtain an MRE....perhaps this could be an avenue of discussion on one of your next visits. I hope this helps!

All the best to you.

 

[cm3553]

Hi

Sorry to hear that you can't keep the prep down. I hate the stuff but can usually keep most of it down, though it has come up a few times. A colonoscopy is the best test since they can take a biopsy but I don't see why they can't at least do an upper and lower GI series. You still have a prep but it's a totally different substance. Right before the procedure you have to drink a barium prep (chalky taste but tolerable). Then they take x-rays as it progresses through your system. It will show where you are having problems.

Never feel that you are stuck with one physician. I've gone through many until I found one that I felt comfortable with and one that would listen. Good luck and keep looking if he won't help.