Crohn's Disease Forum » Support Forum » This disease is worse than I thought

08-11-2015, 07:42 AM   #1
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This disease is worse than I thought

I'm hating everything right now. I don't know what is going on with me and I don't know why nothing is working.

When I got diagnosed I was relieved that my problem wasn't some incurable level of cancer or something. I was actually relieved it was "only" crohns. And of course I am still relieved it's not a death sentence, but I'm really struggling now and frustrated and wish I wasn't dealing with this at all. It's not going away.. It just keeps on keeping on. The prednisone has stopped the bleeding for the most part but I'm still exploding in the washroom everyday. I'm so weak I can hardly stand up at times... Which I don't get cause I haven't seen that As a symptom of crohns, I'm irritable as hell now and and find myself yelling at by beautiful family for no reason... And now I'm about to taper off prednisone -which hasn't done a whole lot for me -and unbeknownst to be I'm apparently about to go through a world of pain in doing so.

I went to the hospital yesterday because I was overwhelmed with a weakness I hadn't felt yet. I couldn't stand up at times.. Other times I could... I was sweating but didn't have a fever. I felt like my body was shutting down and dying. The hospital found nothing and sent me home feeling the same way. They said it could very likely be the meds interactions I was on but they weren't the people to make changes. I'm on prednisone asacol Ativan and some recently started antibiotic for c diff. The later of which I sent in two samples and both came back as positive on the screen test but negative on the confirmation test.

I don't know.. I'm ranting now. I'm sorry.

I hate this stupid disease. There is no freaking cut and dry with it and so I still don't know what to eat, ever. I'm always exploding on the toilet so nothing is safe I guess. Anyway... I have two wonderful young kids and I just want to be able to enjoy them... And I'm having difficulty.

That's all. I'm done.
08-11-2015, 08:13 AM   #2
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Join Date: Jul 2008
Location: California

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Sorry to hear you are having such a bad time right now. Sending you my support.
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.

"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
08-11-2015, 10:37 AM   #3
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Join Date: Apr 2010
Location: New York

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Sorry to see you are feeling so...well, crappy!

Do you have an appointment set up with a GI? It sounds like what you are currently on is not doing the trick - Asacol is more effective for UC rather than Crohn's - I would talk to the doctor about changing medications.

As for the mood changes - that can be caused by prednisone, and is a pretty common side effect. That should go away as you taper off. What dosage does your doctor have you on?

With food - it may be best to go to a bland diet, possibly even a liquid diet to help things calm down. If you are no longer having blood in stools, that is a sign that things are starting to heal.

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
08-11-2015, 11:25 AM   #4
Mr chicken
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Big hugs
Get to the sweet spot is hard at first

Couple of things I would call your Gi ASAP
If your still having symypoms then weaning Pred typically isn't what they would do with Ds
You can also wean really slowly 1 mg every two weeks if needed
As far as 5-Asa ( asacol ) most Gi equate them as a monotherapy like giving aspirin to a brain tumor patient not going to hurt much but not going to help much either for crohns
Ds needed to move up to feel better
Second the liquid diet
Ds is on the partial enteral nutrition with crohns exclusive diet
Which has been effective at introducing remission in a lot of folks
Might want to ask your Gi a lot trying it

Ds drinks peptamen jr as part of that diet
DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid

Aka MLP....
08-11-2015, 11:27 AM   #5
Mr chicken
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Thread above I started when Ds started that diet
Different user name / lost my login etc...
08-11-2015, 11:39 AM   #6
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Join Date: Nov 2014

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Sending hugs to you as well and feeling sorry that things are so tough at the moment to you.

I agree with you. It can be really hard having Crohn's. I'm in such a period now as well and I feel overwhelmed by all the symptoms and feelings quite often now. For me it's hard to go to work and attend university at the same time so I stopped university at the moment.
Maybe there is something you can do to not directly improve your symptoms but to improve the outer conditions and environment. Talk to your family that it's a hard time you are going through because I experienced that my family was really surprised how hard it actually is having Crohn's because I'm a person not talking about problems that much so they thought it's just Crohn's and I'm fine.
Maybe there is a local support group that can give some really useful tips.
Probably you could also think about how you could relax a bit, what you could do to feel a bit more comfortable.
And of course: Talk to your GI that you are not well because at some point I thought I should just be waiting until some medication kicks in and my GI did not know how bad I really was.
Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.

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