Waiting for treatment and frustrated

[DawnG]

Hello,

I was diagnosed with crohn's Jan 2nd this year. It is located in the terminal ileum of the small bowel. Same place my ileus was that started this whole deal. On the day of my EGD and Colonoscopy, I was started on Prilosec and Entocort EC--taper.

When I returned to my GI doc, he was concerned because my pathology is abnormally abnormal. He has consulted with two pathologist locally and now from the UCSF. Yesterday, I returned to my GI doc fully expecting to start either Humira or Remicade as he suggested during the last visit. But, he stated that he is concerned still about the pathology and is electing to send me for consultation and treatment to UCSF IBD Clinic to let them take treatment course. He has also referred me to Rheumatology because my joints are now affected.

I am MISERABLE. Bloated, nauseated, stiff/sore joints, constipated and EXTREMELY exhausted. I am not understanding why I can't just start treatment and if it makes my symptoms better then go with it? I realize these medications are the big guns, but if this is what will alleviate my systemic symptoms....why not?

Any help or advice for what you would do would be greatly appreciated. I am both frustrated and overwhelmed.

 

[FrozenGirl]

Better an expert ibd team if your doc isn't comfortable treating. I think your doctors are just being cautious as biologics make you more likely to get opportunistic infection or activate latent TB.

 

[DawnG]

Thank you. It's starting to sit better with me over the past few days. Thanks for the encouragement. I really appreciate your Kind words.

 

[Justanothercp]

Sorry you have to worry and wait, but UCSF -- great! See what they have to say. Post posted, and I hope you feel better soon. (By the way, im from your area!)

 

[DawnG]

Thank you!! Good to hear. I was really discouraged but this will be a drop in the bucket after everything is said and done. I think my stress is getting the best of me. I am glad I found this forum. You all have been a lifesaver. Thank you again.

 

[David]

Welcome to the community. I can imagine that it must be incredibly frustrating to have a diagnosis and feel terrible but not yet on a treatment. However, I have great respect for your doctor that he is referring you out to another group if he's not 100% sure on the best course of action.

You're going to be in good hands.

Please keep us updated as to how you're doing.

 

[Axelfl3333]

Welcome,crohns is a marathon not a sprint but it's not easy being patient when your ill.good luck

 

[Polar bear]

@justanothercp, which doctor/hospital are you going to in Sacramento?

 

[Justanothercp]

@justanothercp, which doctor/hospital are you going to in Sacramento?

Kaiser, morse ave.
you?

 

[DawnG]

Sorry you have to worry and wait, but UCSF -- great! See what they have to say. Post posted, and I hope you feel better soon. (By the way, im from your area!)

So, I saw a GI at UCSF IBD clinic. Good people up there. He was super nice and informative. He agrees with the crohn's diagnosis as well. But, I am in for more testing and waiting before anything is decided about further treatment.

I think the problem that the Doctors are having is that there is only ONE ulcer they were able to see via endoscopy. I have since done a Pill Endoscopy (but won't have results until the 24th of this month). He wants a MRI as well to see if the ulcers are behind the bowel wall. They are thinking there may be a stricture as well since I have had so many issues with constipation. The hesitation for treatment comes in because they don't want to really treat with the recommended Humira or Remicade for ONE ulcer.

Has anyone had ulcers behind the bowel wall? MRI is pretty usual for this disease right? I just want to see if there is anything I am missing. I would love to have something help me feel better. Although, I hear that flares can last a while. I am currently still on Entocort right now. Having good days and bad days. Thank you.

 

[DustyKat]

The problem with Crohn’s is that it isn’t just a superficial disease but rather can affect all layers of the bowel wall. With this in mind imaging is very common and more so when the small bowel is involved. Scoping has many advantages but is limited as still leaves about 90% of the small bowel uncharted. Pillcam will look at the length go the small bowel but like a scope it is superficial visualisation. This is where MRI/MRE comes into play, it will visualise the full thickness of the bowel plus the abdominal cavity and surrounding organs/structures. Having the ability to do this means it has the potential to identify complications beyond the wall of the bowel.

I think one of the things that may also be playing on the docs mind is what they have seen of your bowel thus far is not matching the level of symptoms you are presenting with. In my opinion there may be a reason for this...

It is not that uncommon to find the opposite, that being those with next to no symptoms that on scoping have quite extensive intestinal damage and therefore there is the potential for the opposite to happen. The reason I say this in your case is that you are newly diagnosed and it is often a feature of IBD that EIM’s (Extra Intestinal Manifestations, including the type of joint pain you experiencing) develop months or even years before the intestinal evidence does.

Since you have ileal involvement and the possibility of scar tissue I would also ensure you have bloods drawn for following levels if they haven’t already been done:

• Iron Stores
• Folate
• B12
• Vitamin D
• Magnesium
• Zinc

This is because the small bowel is where nutrients are absorbed and deficiencies can develop when the bowel is inflamed and/or scarred. Untreated deficiencies can impact significantly on things such as fatigue and a host of other things.

Good luck and please keep us posted with how you getting on. :ghug:

Dusty. xxx

 

[Polar bear]

@justanothercrp - We just moved to Sacramento area, currently seeing a doctor at UC Davis Medical Group. Do you mind giving me the name of your doctor? Thanks.