Crohn's Disease Forum » Support Forum » Undiagnosed Club » Update: still in this club

01-26-2012, 05:35 PM   #1
Forum Monitor
Join Date: Jul 2011

My Support Groups:
Update: still in this club

I'm at the end of an already very short rope. I went to my GI on monday after 6 weeks. I had been on 2 weeks of Xifaxin and 6 weeks of the probiotic Align, along with my Entocort and Tramadol. I hated the Xifaxin, made me feel horrible.
So I told my GI that I've been miserable, not making my shifts at work, still too sick to go back to school (which has made me very depressed), feeling like absolute garbage every day of my life. I was in tears by the end of the appointment. He basically prescribed me some more meds for the pain. He's treating me for IBS, even though he won't give me a dx. I've lost almost 50lbs in these 7mos and I had indicators of CD in my pill cam, but every other darn test comes back negative. He is basically refusing to give me anything stronger than the Entocort, even though it's not working well enough.
He prescribed me nitro-glycerin cream for my booty, along with a steroid suppository. I also got a script for Amitriptyline.
I'm thrilled that the pain might finally be gone, but I hate that only my pain is being treated. There's something WRONG with me.

Anyway, well the tears made him so uncomfortable. I asked him what I should tell my boss, since I was afraid of being fired for calling in so often. I asked him for any shred of hope. He couldn't give me any. All he said was he didn't know what was wrong with me. I said that if I am not better next check up we would reopen all the studies. So I'll have to go through all that damn prep again. He also said he might have one of his partners to look at my case.

I decided to take a hiatus at work, since I would end up jobless if I kept calling in. I'm too sick to work.

I also have to start a low FODMAP diet. I'm on day 2 and it's so daunting.

I'm so tired of this.

Thanks for reading, I'm glad I have this club to vent to.
01-26-2012, 05:50 PM   #2
Super Moderator
Cat-a-Tonic's Avatar
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Hi Dahl, glad to hear from you but sorry to hear that things have been so rough lately. Weight loss definitely isn't part of IBS and it sounds like they've found some evidence of Crohn's - how frustrating that they're still saying it's IBS! I was going to suggest a second opinion and then I saw the part about your doc having one of his partners take a look at you. I hope the new doc is able to properly diagnose you! In the meantime, I hope the new meds at least give you some relief until the next round of testing. It sucks that you had to take some time off of work, but I hope the time off allows you to rest and at least somewhat recover. Hang in there, I know it's so exhausting going through a seemingly never-ending fight just to get a name for the monster. Sending you a big hug!

And hey, you and I are now both in the steroid suppository club! I just saw my GI today and he prescribed them to hopefully help with my recurrent hemorrhoids. I'm on Amitriptyline too and have been on that for over a year. It doesn't seem to help any with my guts, but it prevents my migraines and helps me sleep at night. It can help somewhat with pain relief and with tummy troubles, although it seems to do more for IBS than for Crohn's/colitis. I hope it works for you!
01-30-2012, 12:59 PM   #3
Senior Member
Rebecca85's Avatar
Join Date: Apr 2010
Location: Nottingham, UK
Hi, this might sound really random, but you mentioned on one of your earlier posts that heat makes your symptoms worsen. That can happen with diseases like fibro, lupus and MS. As these disease can affect your nervous system, they can cause bowel problems (as well as the joint issues you mentioned).

Since the entocort doesn't appear to be working, maybe it's time to check out other avenues rather than just looking for a GI problem? Like Allieinwonder found she has a connective tissue disease that was affecting the outside of her digestive system rather the inside.
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
01-30-2012, 01:44 PM   #4
Forum Monitor
Join Date: Jul 2011

My Support Groups:
Rebecca, yes I am very heat sensitive. I hate taking showers. I'm a gross person for not bathing as often as I should, but it just hurts me so bad. I would have to call in to work because I had to shower that day and knew that it make me feel worse than I already did.
I've been to a rheumy and all those test came back, can you guess it, negative. So probably no lupus or anything like that.
Though MS is another story. I've had neuro symptoms for longer than I've had gi symptoms. I had non-confirmed optic neuritis 4 years ago that had me sent in for MRI's but they came back negative for lesions.

I do need to find a GP though.

Cat, I haven't been able to afford my new prescriptions yet, but I should get them tomorrow, if my daddy pays for them.

Also, my FODMAP handout says most people feel relief within days, if not hours (hours!?), but I've gotten worse in the 6 days I've been on it.
The diet is super restrictive, but there are some veggies I can have on it, my first meal on it was a salad with bok choy and butter lettuce. I may still be paying for that. I'm thinking it may also be just the switch in diet is making my guts all screwy. Though I was already eating just restrictive of a diet before, I was practically FODMAP free, except for the wheat and a few others. I don't know if it's that big of a change really.

I'm going to post more about FODMAP in the diet section, see if I can get any feedback on it.
01-30-2012, 02:02 PM   #5
Senior Member
Rebecca85's Avatar
Join Date: Apr 2010
Location: Nottingham, UK
With the ON, and neurological problems, I think that MS is worth looking further into. The diagnostic criteria have changed recently, so you don't actually need lesions in your brain to show up-spinal lesions and positive CSF findings are enough. Also 'new' lesions don't always show in an MRI so it may be worth getting another one done anyway.
02-09-2012, 04:34 PM   #6
natatak227's Avatar
Join Date: Oct 2011
Location: Fairfax County, Virginia
Have you gotten a second opinion? I've been to 3 GI doctors, with my first still remaining as my "main GI." Sometimes doctors are afraid to give more meds, since side effects can be damaging. I would definitely see if you can get a second opinion from another GI doctor; especially those that are at research medication facilities. It took them 5 years to diagnose me with Crohn's disease, even though my colonoscopies all showed inflammation. I too had all other tests (bloodwork, CTs, pill cam) which all came back normal.

Also, I read this book recently which made me laugh and feel better while going through all this. Its called Colitiscope. I tell you, with all my trips to the bathroom I was able to finish it in a day, but boy did it make me laugh! Its hard sometimes to find things that make you laugh, but I highly recommend it.

I hope you find your answer soon!
Crohn's like symptoms since 2007; Diagnosed with Crohn's February 2012

Current Meds:
Humira 40mg/week
Imuran 150mg/day
Vitamin B12
Vitamin D

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Update: still in this club
Thread Tools

All times are GMT -5. The time now is 05:42 AM.
Copyright 2006-2017