Do I need help??

[Christina43]

Hey! I'm new to this forum, new to reaching out or/and talking to others about my disease, especially to those who have it, and I am looking for a local support group.

A little about my history...
I've had Crohn's Disease since I was 14,... I am 21 now and have IBS now too. I was diagnosed during surgery back in Chicago, IL but have been living in San Diego, CA for 5 years now after my 2 Bowel Resection surgeries and appendectomy because my stomach can not take the cold weather.
I had my latest surgery in April 2012 and was almost symptom free except for level 5 pain since until 2-3 weeks ago when All of my nausea, diarrhea (7 stools or more), some vomiting, and pain in my lower left abdomen came back full force. In April my surgery was for what they thought was a block in my intestine ended up being the instestine twisted up and being pulled by prior scar tissue. Is this more scar tissue??
In the last week I've been in the ER (Scripps_La Jolla) twice and once the week before. I can't seem to get enough fluids into me without making myself nauseous or to the point that I actually puke. Now this ER is NOT where my GI doctor is. I go ALL the way to UCLA to see Dr. Choi., who was recently in the Crohn's Advocate magazine. I see her Wednesday.... sometimes just not soon enough it seems.

My subject line is "Do I need help" because I feel I have 5-6 doctors who all specialize in something else and I take a lot of prescribed medication.
I am wondering if I need help in other ways than just seeing a psychiatrist/therapist, GI, pain doctor, neurologist, primary doctor

I've been on the same regimen for awhile:
Phenergen 25MG
Humira Injection
Zofran for when the Phenergen doesn't work or vice versa
Lomotil (as needed)
Imuran 100MG
Percocet 10/325
Soma 350MG - 2x a day
Morphine Sulfate ER 15MG
Ritalin 5MG 2-3x a day
Clonazepam 1MG 2-3x a day
Diazepam 5MG (as needed)
Zoloft 50MG
*my inhalers for Asthma
*nerve Block Injections and Botox Injections in head for Chronic Migraines

and then in and out of the hospital I'm always on Diluadid, Fluids, Phenergen or Zofran, and Benadryl


If anyone lives in San Diego, Orange County, or LA and knows of a support group that would be helpful. If anyone has any comments, questions, ideas on how to help LET ME KNOW!

 

[Jennifer]

Hi and welcome to the forum!

For now I'd use the ER as needed (like you've been doing) and see your GI so you can talk to them about your options (have you contacted them and let them know you're been going to the ER so often?). Its unknown if you have scar tissue building up from the Crohn's or if it healed that way after surgery. I don't know much about loops in the bowel but I've heard it mentioned here before so hopefully others will chime in. I'll see if I can find any threads in the search option above and you can use it too to look it or anything else up if you want.

There's nothing wrong with seeing multiple specialists. There aren't any doctors who know anything and everything (closest thing is a GP and we all know how much knowledge they seem to have). We need specialists for all of our issues. Currently I have a GI, GP, Cardiologist, Rheumy and Neurologist yet in the past I also had a Psychiatrist, Psychologist and a pain management doc.

Have you had blood work done to check your vitamin levels? Being deficient or low in any can bring on symptoms of a deficiency (including depression, fatigue, headaches etc). Gotta check Iron, B12, folic acid, potassium, magnesium, vit A, B, C, D, E, K and zinc. With IBD absorption of nutrients is an issue due to inflammation, scar tissue etc and adding surgeries on top of that makes it even more of an issue.

 

[Angrybird]

Hello and welcome to the forum.

I agree with Crabby about getting to the ER as you need to - especially if you are not getting in any fluids, the very least they can do is sort a drip out so you do not get dehydrated. Also are you able to contact your GI to let them know about this? They can at least be preparing a plan of action for when you see them Wednesday, you are on quite a hefty list of meds so some scans at least definetly seem in order so they can check what is going on inside physically.

Please keep us updated on how you get on.

AB
xx

 

[David]

Hi Christina and welcome to the community.

Wow, that's quite a list of medications you're on

Out of curiosity, how much of your intestine has been removed and what specific parts?

I've talked to Dr. Choi privately before and she stated she regularly checks vitamin B12 so I assume you've had that tested. But has she tested your magnesium levels out of curiosity?

All my best to you.