Frustrated and Don’t Know What To Do

By tt1785

2 min read

Back in August 2019 I started having extreme abdominal pain and diarrhea. It lasted for 3 days and eventually I went to the ER. I had a CT scan, ultra sound, X-rays, and blood work. They came back and said I had a bout of colitis and prescribed pain meds, 2 antibiotics, and spasm pills. I followed up with a GI doctor and he did blood and stool tests to rule out CDiff. I didn’t have it so he wanted to do a colonoscopy and endoscopy. They saw the colitis flare in my colon and tried me on steroids.

I broke into a rash with the first steroid and the second one that I was prescribed made me so agitated. I then developed cold sores (which I never had before), joint pain, burping, continued diarrhea. But when I took my pain pills, they would make me constipated and then I would have to take a stool softener / laxative. I continued to have more cramping and pain in my stomach and really bad joint pain, hair thinning. The doctor sent me for second opinion and that doctor could not figure this out.

At my wits end

Well fast forward to January 2020 and I’m still having issues. I had a colonoscopy and endoscopy this past Monday and everything was clear and even my biopsies were normal. I’m in the processes of being approved for humira because all my symptoms point to Crohn's disease but they can’t conclusively diagnose it from all the testing. I’m at my wits end. It’s affecting my everyday life and my work. I don’t want this to consume me. Recently I read on here that some people have had the same issue like me and have had multiple tests and procedures and doctor appointments. I also noticed that a lot of people requested that their doctor conduct a pill cam and they found Crohn's and inflammation in the small intestine. I haven’t had that done, but after seeing how many people are in my same situation; I’m going to definitely ask for the pill cam test. I hope it helps to show I’m not crazy and making this up because that’s what the doctors make you feel. I’m in pain everyday and I’m so frustrated.

Can anyone give advice or help me?

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Sahara Fleetwood-Beresford Moderator & Contributor
I'm so sorry to hear that you're having such a rubbish time <inline-mention user-id="2293650" username="tt1785"/> ! We do tend to know our bodies, and what is normal for us, so if we think something is wrong, then it probably is. Definitely discuss further diagnostic options with your healthcare team. Hopefully Humira will reduce your symptoms quickly, and have you feeling better in no time! - Sahara (team member)
1. tt1785 Member
 Thank you very much. I have been denied Humira from my doctor since my colonoscopy came back clear. However I’m still having pain and spams in my upper left side of my abdomen and a lot of joint pain. It’s soo frustrating because I was so close to getting humira, it was already approved by my insurance but the doctor cancelled it. My mom and I have been researching so much and being our on advocates. It’s just a shame because my doctor knows about the pill cam test and you would think he would have suggested it. I feel like it’s all about making money for them.
2. Sahara Fleetwood-Beresford Moderator & Contributor
 Oh no! I'm so sorry to hear that! Keep pushing for that pill cam! I know how exhausing and soul destroying it can be when you are already so tired and feeling unwell, to feel like you have to fight to be heard, but it will be worth it if it gets you answers and treatment! Glad to hear your mom is battling with you! You can't put a price on that! - Sahara (team member)
poonicorn Member
Hi <inline-mention user-id="2293650" username="tt1785"/> , I would definitely ask for the pill cam. Something else that you might read on here often is "be your own best advocate." That one is sooo important! You should not feel uncomfortable with your doctors, made to feel lesser, or dismissed by them. You're not crazy. Most doctors just don't want to listen and sometimes you have to make them listen. Do your research, ask questions at your appointments, and talk about it to someone you trust too. Also for the hair, you might want to ask your doctor about taking a multivitamin without iron (Supplemental iron can worsen constipation from certain medications) or try a repairing shampoo. I'm currently using a red wine repair shampoo and I haven't been losing nearly as much hair as I used to. Best of luck, poonicorn
1. tt1785 Member
 Thank you! My mom and I have done so much research and been advocates. It’s a shame that I have to bring things up for the doctors to test when we as patients are going to them for their knowledge, guidance, and help. I’m very frustrated because I would have never know about the pill cam if I didn’t come across this site. You would think your GI doctor would suggest the test since they are suppose to be the “experts” helping us as patients. I have another doctor appointment on the 31st and I’m going to talk about this site and the pill cam and how a colonoscopy or regular endoscopy wouldn’t show Chron’s or anything in the small intestine. I hope to get more answers soon. I’m having really bad joint pain and pains in the left upper side of my abdomen. The spasm pills help and tramadol helps. But I want it to all go away. Since my last colonoscopy came back clear my doctor denied the approval to put me on Humira. I was soo close to getting it and it was already approved by my insurance. But once he saw I had a clear colonoscopy, he denied me of the medication.
thedancingcrohnie Moderator & Contributor
Definitely push for the pill cam. Many get their diagnosis from those test results, as their IBD is in the small bowel. I'm sorry you are going through all this. It is definitely frustrating when you feel like you aren't being heard. Just know we understand the struggle and are always here rooting for you. Keep us posted with how things go. Elizabeth (team member)
paul1701a Member
Dear TT1785, It sounds and appears that you are having a difficult time just getting a clear diagnosis from your doctor(s). It appears as though you just haven’t found the right doctor for you. A good working doctor-patient relationship is an absolute necessity in treating Crohn’s or any other disease related 2 Crohn’s or any other related to IBD. I will certainly pray 4 u in/days ahead as you bravely battle with Crohn’s. May God be with you & keep you in the right path to the right doctor. Make sure you take charge of your medical care and how it is directed. Being a passive patient will not help you get what you need. When you visit a new physician, make sure you have your medical history, list of current medications, & any medical records with you so that you don’t forget things. Having a list of questions to ask the doctor is very important also. Keeping a running diary of symptoms you’ve experienced should be kept. The more information that you have to present that is given in concise words will help establish an attitude of respect on the part of the doctor as well as cutting down the amount of time it takes to make a proper diagnosis. Don’t be afraid to ask questions. Being assertive yet listening with an attitude of respect will help foster a good working relationship between the doctor and you. I hope & pray that you will get the answers and the help you are so desperately seeking. God bless and take care.