Can this all be Crohn's related?

[sidney75]

Hello all,

I've been reading through the forum for about a month and it has been extremely helpful. I was admitted to the hospital with what I thought to be a nasty stomach bug, but it turned out to be a full intestinal obstruction. I was given a CT with IV contrast which showed Ileitis, likely from an underlying inflammatory condition. I also had a nasty infection - NG tube was administered as well as antibiotics. I was sent home four days later only to be readmitted with another obstruction, which was also treated with antibiotics. I had a follow up colonoscopy which showed a mix of mild and marked inflammation throughout both large and small intestine, all the way to my rectum; however, I was not diagnosed with Crohn's because the GI doctor said there were no makers for Crohn's and the inflammation was non specific. She said it could take years for me to get a proper diagnosis. Since then, I have had non-stop bouts with constipation, pain in my knees and lower legs, some mild episodes of cramping similar to feeling obstructed, and was sent to the hospital yesterday by my GP with esophageal spasms (I thought I was having a heart attack), although they did not do any upper GI testing and I have not had any upper GI testing done to date outside of chest X-rays. My GI doctor has referred me to a rheumatologist as she thinks it is more systemic inflammatory rather than isolated to the bowels. I have had some general blood work and one ESR test which showed some inflammation levels that were 3 times as high as my last test several years ago, but nothing that would be flagged as abnormal. I have not pressed very hard for upper GI testing as I assumed if it would help a DX they would order it. My symptoms feel like a game of whack-a-mole, as one day I feel fine and the next something pops up that disrupts my life. I have been told by both GI and GP that it is highly likely I will have another obstruction at some point, and I have a job that requires 60-70% travel. I'm constantly paranoid about getting sick while I am traveling as I travel alone. I have a husband and four teenage boys at home and I feel like this is making my life extremely unpredictable right now and I am discouraged. My appointment with rheumatology is not until February and I am exhausted at the idea of trying to manage this on my own until then. Thanks for reading, if anyone has any suggestions, it would be greatly appreciated!

 

[StarGirrrrl]

Hi sidney75, I really am sorry to hear of your troubles.

I have a couple of suggestions. One would be to request being put on a cancellation list for your Rheumy, that way you may be seen sooner.

You could also ask to see another GI for a second opinion, and don't be afraid to push for upper GI testing given your change in symptoms. Even your GP could organise that.

To be honest having visible inflammation in both intestines leaves me puzzled as to why your GI ruled out Crohns so a second look would be a good idea in my view.

Also, with a husband and 4 teenagers at home, make sure they are doing a fair share of house work to try and take some of the stress off of you!

 

[sidney75]

Thanks so much for your response. I was also very confused as to why they would not give me a diagnosis, but she said she could not make the diagnosis with generalized inflammation and no ulceration or abscesses. Also I present with constipation and from what I have read on this forum is one way Crohn's presents, but not necessarily common, and in July (prior to my obstruction) I had a CT after having some very similar symptoms with no obstruction, and it did not show inflammation. She said if it is Crohn's it is early stage and not diagnosable. On a positive note, I have been consistently feel much, much better over the past week for the first time since October and the GI issues seemed to have settled down. What an absolutely awful and unpredictable few months that was, and I have genuine respect for those who struggle with IBD. At times I was just so frustrated and felt like such a burden when I could not control how my body felt or my limitations. And btw, my family takes great care of me when I'm down (and when I'm not) - I'm the lone woman in this household, so when I was sick they rallied together to keep the ship moving ahead. Thank you much!