I’ve been dealing with Crohn’s Disease since 2002. I’ve gone the immune-suppressing medicine route (Prednisone, Pentasa, Imuran and Entocort) but I hate the side effects these meds have on my body. (Blood work every 6-8 weeks, constant upper respiratory infection, insomnia, unwanted hair growth, weight gain, to name just a few)
In late 2006 I stopped all medication due to a surprise pregnancy (hello child #5) as the medication side effects that would also harm my unborn child. Miraculously she was born healthy despite the meds I was on for 6-weeks till I realized I was pregnant.
In 2012, food poisoning caused a Crohn’s flare that landed me in the hospital for a week with a bowel obstruction. While staying at American Fork hospital, I got tired of arguing with the assigned GI doctor, Dr. Alsolaiman who kept insisting I have a TB test and immediately start Humira. (Apparently a TB test is required before you start taking the drug) After a lot of arguing and headaches for both of us, I agreed to temporary prednisone injections only, but kept insisting my body would recover without bowel resectioning surgery or Humira. Mercifully it did, and I left the hospital after 4-days with about $10,000 in medical bills. Thankfully our family has insurance so we were only only the hook for $3,500, the cost of hitting our deductible. 🙄
Most of the time, at manage Crohn’s well through diet and exercise. Endurance exercise 6 days a week with no dairy, gluten and very little sugar gives me the ability to live life healthy and take care of my family. I still have days where my gut and digestion aren’t normal but I roll with it and can’t really complain, after all I still have moderate/severe Crohn’s Disease in the last foot of my ilium.
Wednesday evening after a very long day I started feeling nauseous and soon lost my dinner and anything else I consumed during the day. An hour or so later, diarrhea started as well, leaving me wasted from both ends. I figured I had food poisoning from a protein bar that had been in my warm car earlier in the day, as no one else in my family was experiencing any symptoms. I had a miserable Wednesday night into Thursday morning with little sleep and constant sprints to the bathroom.
Thursday mid-morning I still couldn’t keep anything down. As soon as it entered my stomach, I didn’t stay. Knowing I was probably getting dehydrated, mid-afternoon I called my GI doctor at Revere Health in Provo to see what was recommended. Our phone conversation went like this:
Revere GI receptionist: Thank you for calling Revere Health in Provo, how can I help you?
Me: Hi, I’m a patient of Dr. Bodily’s with moderate/severe Crohn’s Disease. I think I have food poisoning as I’ve been throwing up and having diarrhea for about 24 hours. Is there a nurse I could talk to?
(Takes my personal information to verify I really am a patient)
Receptionist: unfortunately all our nurses and medical doctors are gone for the day. (it’s 3:30 pm on a Thursday) I can try and call the medical assistant on call if you’d like?
Me: That would be great
(I’m put on hold for 5 minutes while she tracks this individual down)
Receptionist: unfortunately, because you hadn’t been seen in our office “regularly” and your last appointment where you were seen was in March, the soonest you could be seen by any GI doctor (let alone yours) or any PA is July 15th… (two weeks away)
Me: I can’t keep anything down, and the medical assistant wants me two wait two weeks???? 😩
Receptionist: Unfortunately, that’s all we can do.
Me: I’m probably dehydrated, could you guys give me some IV fluids? (They see patients all the time for procedures inside the clinic that require IV’s)
Receptionist: Hold on, let me ask
Um, excuse me… I just told them I have moderate/severe Crohn’s Disease and I’ve been vomiting with diarrhea for nearly 24 hours and I can’t be seen?
While she’s asking… I’m processing our conversation and honestly, getting mad. I feel like crap, so I called my GI doctor because as soon as my family practitioner hears that this is a GI issue, because I have moderate/severe Crohn’s Disease, they tell me to call my GI doctor because they’d have to refer me out anyway for any treatment or procedure.
Receptionist returns to the line: you’re not on any meds right?
Me: correct, I treat my disease with diet and exercise….
Receptionist: unfortunately we can’t do that (IV fluids) here. You’ll need to try an Instacare or the ER for IV fluids. Did you want to schedule that appointment?
Me: no… thank you for your time.
Receptionist: of course, I hope you feel better soon.
When I hung up, I cried even though I hardly had any tears. My options were Instacare or the ER.
When I go to the ER, as soon as they find out that I can’t keep anything down, I’ve been vomiting with diarrhea for 24 hours, my whole mid-section is sore and inflamed, and I have moderate/severe Crohn’s Disease, they like to admit me to the hospital with IV’s and bowel rest. That means a nasal gastric tube inserted into my nose that’s incredibly painful to have put in and is uncomfortable in the back of my throat. (NG tubes also leave me with a sore throat that feels like strep for a few days after once it’s been removed) A hospital stay also means stool samples and another colonoscopy.
Then likely I’m back to the whole situation I mentioned earlier, being inpatient with a GI doctor I don’t know who wants me to get on medication I don’t like with side-effects I can’t stand.
Instacare is a little bit better. Yes, I can get the fluids, but once again I receive grilling and castigating that I have moderate/severe Crohn’s disease and I’m not on immune suppressing drugs for said Crohn’s and this could actually be a Crohn’s flair, and this is a poor way to manage my disease (one doctor actually called me irresponsible)… blah, blah, blah.
Unfortunately, I’ve lived both of these experiences first-hand, a couple times over.
Honestly, when I feel like crap, I would appreciate a medical doctor that was kind and actually tried to understand WHY I’m treating Crohn’s Disease the way I do. I’m so tired of the mentality that immune suppressing drugs are just the way things are and there’s no other viable options in the GI medical community.
The phone call reminded me that once again I’d need to look out of the standard medical treatment box. (Do they really even wonder why I don’t like to be seen) I knew I needed fluids, and the ER and Instacare are spendy and have their own individual issues.
While mulling over my options, I remembered there’s mobile IV clinics in major cities, so I thought I’d try my luck. A couple years ago when I first heard of this service post half-marathon race, Salt Lake City had only one option… in Park City. I’m happy to report there are a few more providers now. None in Utah County yet which means a big annoying commute north through traffic.
I called Wasatch Infusion because they were open till 8pm and the time was now pushing 5pm. Thankfully they had an opening (their last one for the day) at 6pm. I drug myself out of bed and my daughter drove me 45 minutes to the clinic.
Wasatch Infusion took great care of me. A little medical history and some paper work, and no harassment about anything. I decided to do 1liter of fluids with some vitamins and minerals to help replace what was lost. I opted for Zofran for nausea, Toradol for pain and inflammation, and Benadryl to help me sleep. All meds given via IV and it was agreed that 2 liters of fluids might be best so we’d evaluate how I was doing after 1.
A quick poke and I began feeling much better. In the end, I went ahead with 2 liters and my daughter watched Netflix while I rested in a very comfortable recliner. The whole process and procedure lasted 1 hour. I went home and finally slept for 12 hours straight.
I was so dehydrated, I didn’t even need the restroom once despite the IV hydration. Currently, I’m on smoothies and soup as I give my GI system time to reset.
I guess my point in writing this latest experience down is to encourage people to think outside the standard medical box. I needed IV fluids and a few simple medications, not immune suppressing medication. I was able find what I needed outside the typical establishment, and it only cost me $200, and I by passed a lot of headache and paperwork.
Doctors can be both right and wrong. No one sickness or disease is 100% the same as someone else’s. Just like people come in all shapes and sizes, illness does and medical treatments should as well.
I want to be completely clear, I am not against medical drugs and conventional health care. I simply take issue with medical providers who do not respect patient self-advocacy/individuality in treatment options and the frustration that comes from the lack of alternative medical treatment options that are covered by the current medical insurance model.
For me, I will not have surgery or take immune suppressing drugs for Crohn’s Disease till I have no other choice. I feel that choice deserves respect by individuals in the GI medical field. Everyone must learn to advocate for themselves when it comes to their own health. If more patients required a different approach, I believe things would change. Here’s hoping for a brighter future.