Was told IBD and now not? So frustrated.

[Beckmar]

For probably 7 years now I have been experiencing strange pains in my abdomen around my belly button area and difficulty swallowing food. It would come and go and over the years I would go to the ER where they would just discharge me with something different each time.
Early 2015 I began experiencing pain but also generally unwell feeling. I was nauseated a lot and trips to the bathroom were frequent. The pain would be severe and I could feel it in my back even. This would go on for awhile and subside.
In May after dealing with a long while of pain and sickness I finally went to the ER where they took an x-ray and just gave me medicine antibiotics or something. Bloodwork said fine. I left that day with them claiming it to be gastritis.
Pain kept up and so did the frustration and confusion. I was back at the ER in July with crippling pain in my lower right side and I thought it could be my appendix. I was vomiting and so unwell. I was admitted. They found inflammation via x-ray and treated me with pain medication and anti-nausea medication. A doctor viewed previous visits and saw on previous scans there was inflammation and it was never taken seriously. He asked why I never did anything about it. It is hard when I'm told it could be ovarian cysts and to go home and rest. I had a colonoscopy done which showed narrowing in my ileum.
The gastroenterologist at the hospital told me it is IBD possibly Crohns, he ruled out UC.
Now, bloodwork came back fine, biopsy showed no granuloma. I followed up with a GI and had a pill cam done. This showed small patches of inflammation and she never discussed my ileum with me. She ruled out Crohn's Disease. Now I am getting. Fructose breath test and I don't feel that fits at all.
I have lost a ton of weight, pain, nausea, joint pain, mouth ulcers, loose stool.
I am so confused and feel as though this is going to be a fight.

 

[ronroush7]

Did they do a fecal calprotectin which is a stool test which measures inflammation?

 

[Trysha]

I can understand your frustration.
There are Good Gis and not so good ones.
Why don't you get referred back to the first GI who found some evidence of IBD.....
Do it as soon as possible so that things do not get out of hand and for your peace of mind.
Feel better soon
Hugs and best wishes
Trysha

 

[ronroush7]

Amen.

 

[tots]

I am so sorry your having trouble getting a diagnosis. It took me a long time and and then had to be Dx again 4 yrs ago. Its crazy and I don't feel like people with IBD get great care and consistent info and treatment.

I used to work for a GI dr, but I have learned so much from this forum. I have been able to
ask get questions and that led to different medications i would not have had otherwise.

Good luck and I hope you feel better soon!

Lauren

 

[Beckmar]

Thank you, everyone. No fecal calprotectin. I called the GI from the hospital to make an appointment. My insurance isn't the best so I hope the second or even third opinions (if necessary) get approved and I can get a diagnosis and treatment. I don't understand why nothing was discussed with me about an enlarged spleen or the narrowing in the ileum. It is all gray area. I need treatment so I can feel well and keep up with my children. I thought I had answers and then get slapped with the "it's not Crohns" when I thought we were certain it was.
Is it possible when it isn't active to still feel like crap and to not get positive results?

 

[Skipper85]

I lived at Childrens Hospital of Pittsburgh from the ages of 10 to 15. I have Factor 5 leiden ( a clotting disorder), and as a child I had IBD leaning towards Ulcerative Colitis as it is very hard to tell apart in children. I had 11 major surgeries that ranged from 5-6 hours to 38hours being the longest. I have had a total collectomy and pathology examined all of my large intestinews as well as a fe feet of my illium, which is the normal effective range for UC, and the results came back, 99.3% positive that it was U.C. At age 21 I returned for stomach pains at Childrens for the last time. I could not really be considered a child anymore. 3 days of testing, scopes, etc, and I was finally diagnosed with Crohns Disease now active in my remaining small intestine. I can directly empathize with your frustration, but after much deliberation and thought, I could let go of the frustration of the "misdiagnosis" as really a diagnosis is a best educated guess, with new conditions immerging every day. The hard part for me is accepting the fact that I have a chronic illness.
Compiled with that, at age 12 I was diagnosed with Factor 5 Leiden after dehydration from the Crohns and getting a parasite called cryptospiridium due to the massive amount of immunosuppressants that I was on for my IBD, which lead me to have the second largest survived DVT charted in North America. Im thirty years old now and last year had my second DVT caused by having double lung pneumonia and being prescribed an antibiotic that made my Coumadin in-effective. Within 4 days my entire right Leg was completely clotted shut from nearly the top of the femoral vein, completely through the popliteal , ending at the junction of my Tibial Veins. I was put on Lovenox injections and had another ultrasound 10 days later that was misread and sent through to my PCP that everything was the same. That radiologist sent an addendum through the next morning that on second review, I was contiuing to clot into the Tibial veins ( when my blood was so thin I shouldnt have been able to clot). This addendum was disregarded by my PCP as a duplicate transmission, and I am the one who found it out myself by pulling all of my own records and reading my own doppler. At that point , the clot was 6 months old and there is nothing that can be done about it.
I love my doctor, and I loved my doctors as Childrens Hospital (Who have became very good friends as well as leading authorities in their fields. What I dispise is missing things out of shear neglegence to follow through as well as a diagnosis, especially a fast one. Im sorry to hear of your experience and can directly relate!
In todays world it seems that everyone wants to know exactly the diagnosis and name of their condition, naturally it gives them a sense of stability although its always a crap-shoot on whether it is correct or not. I have learned that the diagnosis is insignificant in my eyes and that what people would do better to seek instead, is keeping close tabs on the information related to the symptoms. This has proven to enable me to be more effective at making a difference going forward. In the case of this current Chronic DVT, I learned that this approach to illness is effective but unfortunately is too late for me now. All of my doctors besides my PCP are now at Johns hopkins of Baltimore , MD. The simple act of keeping more informed than your doctor can go a long way. If I had pulled the ultrasound and reviewed it right after it was preformed, Hopkins could have went in and removed the clot through angioplasty since at that time it was only 10 days old. Since I didnt pursue the information until 6 months later, the clot is permanenet, has destroyed every large vein in my right leg as well as every valve within those deep veins and is inoperable now. As a result we now have one more procedure to try this month, which is more of a process of cutting out liability than it is expected to help. After that, I will be facing the decisions of either destroying my liver with the massive amount of hard narcotics that I take all day long in an effort to be mobile, or the decision to amputate from below the knee down, to enable blood flow and hopefully eliminate much of the pain...
In summary, I have come to look at a diagnosis as something of no significance when compared to being directly informed with the information used to formulate the diagnosis. I can look past a mis-diagnosis as it is a tangible thing, a best educated guess, as well as the frustration that comes in the form of a feeling of betrayal. Never the less, I still have trouble accepting the facts asid from the label (diagnosis) and havent come to peace with the fact that I have them, which is a totally different process...
Im sorry to have written a novel of a reply.. I just wanted to let you know that I can directly identify with what you're experiencing currently, my thoughts on what the priority, importance, and value of a diagnosis has become to me, and what I have found to be the most effective tool in dealing with a chronic illness....Regardless of its label or diagnosis. I hope this novel in some ways helps you and wish u all of the best as you journey forward. If this post helps you to let go of the frustration of a "mis-diagnosis" then I am glad to have written this... If in turn , after reading this, have developed a thirst for knowledge aside from any label concerning your illness, then I have truly accomplished the mission that I intended when I first began typing...

 

[ronroush7]

Sending support to all.