Newly diagnosed and meds not working

newly diagnosed and meds not working

Hi I was diagnosed with CD based on a pill cam which I had on 4/10 and received the diagnosis and started meds on 4/17. Prior to testing and diagnosis I began having pain in February which was originally thought to be an IBS flare up. The pain continued and after a trip to an urgent care and two ERs I was finally admitted the third time I went to the ER. At the time I had a bladder infection/UTI pyelonephritis, enteritis/abdominal pain, vomiting, nausea, weakness, candida in the esophagus and some complications from endometriosis. Prior to hospitalization I was on bactrim and flagyl. IV antibiotics were continued for the first few days then they had to start a potassium IV in addition to giving me medicine for rectal bleeding. Essentially I was a mess.
The endoscopy perfomed in the hospital showed gastritis and candidal esophagitis; the colonoscopy found grade II internal hemorrhoids. The hospitalization was from 5 Mar-10 Mar. I was allowed to go home provided I saw at least two of my doctors (PCP and OBGYN) within 1 week. I was then referred to a infectious disease doctor to clear up the issue with the candidal esophagitis. I have since been told my immune system is good by that doctor to now be diagnosed with CD based on small ulcerations mainly in the ileum & jejunum and superficial ulceration in the proximal duodenum. I started with budesonide 9 mg per day for two weeks only to be told to do 9 mg for 4 weeks because the pain isn't going away. They have since added pentase 2000 mg per day with 4 pills in morning and 4 in the evening.
After getting the nausea and horrible indigestion to be less frequent I tried things like baked tilapia and got fancy and had a veggie burger with brown rice and apparently that was not a good idea. Since February I have not enjoyed a meal. I am and have been juicing for about 2 weeks. It really is keeping me hydrated and from going to the hospital but I am concerned because even having had no solid food just juices, Ensure and homemade mango smoothies I am still having pain. The majority of my pain is in the Left upper quadrant. I am in pain daily several times a day. I also have pain in the right lower quadrant. Not taking anything in may only land me back in the hospital but I am not sure of what to put in my body to help get this under control. I juice celery, carrots, apples, pears mostly.
Right now aside from abdominal pain I have a really sore throat and swollowing is not fun but the esophagitis was no longer seen on the pill cam. Is it possible for that to recur due to CD? Also I am seeing a hematologist on Wednesday just to make sure my nocturnal seizures and the pain I have in my hand in addition to occasional Raynaud's type issues with my hands and feet are not related to lupus. Wow! That just seems like too much but I would love some input, insight, advice, words of wisdom or just to hear how some of you are making it thru the day to day and keeping yourself going. I am just trying to keep going because I know this will pass but good grief when?!? Sorry for such a lengthy post. I appreciate any of you who take the time to read it. Thank you! Also I am a mother of two with a husband who is on a perpetual contract in Kuwait with no end of contract in sight. So stress less is a great obstacle for me.

Could I suggest getting on a strong probiotic? I recently went on Natren Healthy Trinity and felt results right away. That will help build your immune system and help you fight this attack on your body. My doc said to take up to 5/day and then taper down when things are under control. I would also suggest ginger tea to help soothe the belly. Drink only water to help heal the esophageal issue. Watch your diet carefuly so that you avoid any further inflammation. Good luck to you! I hope some of this may help you.

Thank you! I'm using the GNC ultra 25 probiotic complex once a day but I will try adding it more times. I've added ginger to the juices but the past couple of days I just don't want much of anything. Trying to push water still to avoid dehydration. I've had cinnamon tea to help with nausea and indigestion. Sadly my diet consists of liquids only but it's less painful than having food.

I have no suggestions.. just a HUG!

Hi there and welcome to the forum! I'm glad you found your way here but am so sorry to hear of your problems. *hugs* to you.

Can you tell us specifically about your "Raynaud's type issues with your hands and feet". Do you have discoloration?

Again, welcome!

Hiya jrnygrl
and welcome

I don't really have many suggestions regarding juicing or diet, but I was thinking about Prednisolone to add to the Pentasa. If your pain is upper left then the budesonide won't reach there, unlike Pred which will go thro the whole system.
You've obviously got some inflammation going on, but IMO Pentasa won't help until you've got that inflammation under control. Pentasa acts like a maintenance med, an anti inflammatory, like an aspirin to ward off future inflammation.
You shouldn't have to put up with this pain, there are other alternatives out there, speak to your gastro.
Good to have you here
lotsa luv
Joan xxx

My heart goes out to you. No help sorry. But i hope you do find soemthing that does make you feel better soon. I do agree, with an above post you shouldnt have to be in pain like that. there has got to be soemthing else for you!!!

Really rough day today. I ended up doubled over in pain in Walmart. I was being taken to the hospital by a friend when the doctors office called me back and said my doctor could see me. He thinks this could be stress/anxiety or SLE vasculitis related but now doesn't think it's Crohn's despite the diagnosis and meds already given. He thinks the meds may have brought back the esophagitis. He is putting me on Pamina, weaning me off Budesonide and took me off Pentasa. He is also recommending peppermint capsules and referring me out to a pain management doctor (appt 5/18) and rheumatologist (appt 5/23). He sent me for bloodwork also. I am now in bed and still in pain. I have been working on a Naked Mighty Mango since about 9:30 am CST and trying to sip water. Very very frustrated and in a LOT of pain. I also made an appointment with an internal medicine doctor to see if they can offer some input (appt 5/9 - same day as hematologist appt). The GI doctor didn't even mention prednisone.

The Raynaud's situation happens mainly with my hands. They start to burn and hurt really bad and also turn colors. They hurt to touch. It hasn't happened a lot recently but last I remember my hands are really red then are white and sometimes blue at the tips. I had my right foot just burning one time and when I looked at it is was red. It hurts for a while then passes. The doctor in Kuwait years ago suggested it may be Raynaud's but with little frequency I didn't follow up on it. It is amazing how seemingly insignificant things come back up down the road.

I am going to lay down and pray this pain will ease up, ideally go away but I don't want to get ahead of myself.

Thank you all for the warm welcome and the hugs!

Hmmm. Have you had your vitamin B12 levels tested? I ask because I wonder about the possibility of peripheral neuropathy causing some of those symptoms and B12 deficiency can cause that. And people with Crohn's Disease are commonly deficient in B12.