Update/Question

[allieinwonder]

Hello All,

I wanted to let you guys know whats been going on with my "search for crohn's journey". I have told the undiagnosed club, but I wanted to share with all! So after my last thread with the lovely "vacation" in the hospital (ha ha), I went to the GI on Wednesday and I think I have made some progress. We talked about everything that happened in the hospital, my current symptoms, and just life in general (since IBS/IBD can be much worse with stress). He basically said that even though they felt the inflammation (since that section of my stomach was swollen and warm to the touch) that they didn't prove anything. He said that yes, it is possible that I have crohn's in the small intestine, and he ordered a small bowel follow through and a pill cam. He is really big on being very careful with what tests he orders (these are the first tests he has ordered for me) because he doesn't like the risks of them. He said the pill might get stuck and I might get pulled into emergency surgery...my response was "well, at least I would know it is crohn's!". He agreed and so now I have my small bowel tests, at last. I have NO idea what I will do if they come back normal...I will probably give up for awhile, try and treat it as IBS and wait for it to get worse enough to show up on tests.

I also am showing a lot of malnutrition symptoms, including the cracked corners of my lips/mouth, so he had me do more blood test to check for anemia and vitamin deficiencies. My blood tests have been "outstanding" to him, which is why he keeps saying IBS...I know blood tests don't mean everything.

Alright, so going back on this whole "get a test to show some results" idea...is there any way to get inflammation/symptoms of crohn's to get worse or not heal so that I do get some tests to show something? I'm not saying make myself sick...but make it a bit worse to show up on the SBFL or pill cam? I'm so frustrated with my body that I just want to to cooperate for once. My symptoms are too bad for IBS, but mild-moderate for crohns. I just want it to show up so that I can get the proper treatment! I know my question sounds stupid and crazy, but has anyone on here been in my shoes and just wanted proof? And was able to achieve it? I am not limiting my diet anymore, including fiber, soda, and fresh fruits/veggies, but is there anything else I could do?

I hope everyone else is doing well! This forum has been the best help the past 6 months, and I just wanted to let you guys know whats going on!

 

[Saphira]

Brandon's blood work has been coming back "good" too, but he has been on Asacol for two years, and was on Entocort when they took his blood to do the Prometheus testing, then he has been on Pred. All the Meds are meant to decrease the inflammation and if they are at least partially working wouldn't this affect the results?

Good luck with the pill cam. Our second (indecisive) Doc looked for granuloma's on the biopsy after the colonoscopy as the definitive answer of crohn's but didn't find any so it's still IBD even though his terminal ileum was friable inflammed and bleeding!

Trina

 

[allieinwonder]

Thanks for replying! I saw your post on another thread about your son's journey. How awful! It always baffles me when someone is dxed, but then it is taken away. Especially in a case where they have had them on meds to help! So weird...

All my tests have come back normal, but my symptoms are way to severe to just rule out as IBS, so I keep trying. The spot that hurt for me has been swollen and warm to the touch, and I also have lost tons of weight, which is not consistent with IBS. I'm hoping the pill cam will be my final test and I can finally get the correct meds.

 

[Saphira]

Have you discussed a colonoscopy? It is done routinely for over 50's in the USA as a preventative measure so the risks can't be that bad?
Trina

 

[allieinwonder]

In the past year I have had 1 CT scan, 2 upper endoscopies, 1 colonoscopy, 2 ultrasounds, and many blood tests. I have also had surgery for what they thought was a hernia (trying to explain my pain) but they found nothing. I have a small bowel follow through scheduled for May 16th, and depending on the inflammation/narrowing I will have a capsule endoscopy soon after that. With the malnutrition symptoms my doctor thinks the affected area is my small intestine, which wouldn't be looked at with the upper endoscopy/ colonoscopy, and blood tests with IBD/crohns can often come back normal. I also had blood tests last week to look for anemia (I have blood in my stool or black stools most of the time)/vitamin B deficiencies, but I haven't gotten the results yet. My doctor re-diagnosed me with severe IBS a couple months ago but when I called him telling him that I was running a fever and part of my stomach was swollen he told me to go to the ER, and I ended up hospitalized for five days for "bowel inflammation", but they couldn't find the location of it with their tests and I asked to be discharged (I had lost tons of weight and I felt like they were not going to find it with the tests they were running). Before I left they did my 2nd upper endoscopy, and they cut too deep when taking biopsies, and I was not able to prep for the colonoscopy they wanted to do because I was vomiting blood.

Thats just a tid bit of my story, if you want to see the rest I have many threads...I know this is crohns I just have to find the proof...no one with IBS would be this sick.

 

[ameslouise]

Hi Allie - Just wanted to wish you good luck on your pill cam! I'm sorry you haven't had any luck getting a firm DX yet. I hope this gets you closer.

- Amy