New to RI

[bcg]

New to RI and totally miserable

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Hello everyone. I just got out of the hospital and am so down with no one to talk to, so I figured I would give this a shot. I have had Crohns for over 35 years and I feel like every time in my life when things start to get better, it strikes again. I just relocated to RI from NJ and spent months researching doctors and hospitals so that when the time came (not if.... as we all know), I would be prepared. I actually interviewed 2 different practices and settled on one which was a huge mistake!

As I was saying, I just had my most recent obstruction/flare up and went to the new hospital for the first time. No one knew me and I had been told that this was "the hospital to go to if needed". Well, who ever told me that must have been hallucinating. They admitted me to the surgical service, due to the fact that I "might" have needed surgery. Every order/medication/question/anything, had to go through the surgery team, who had no clue about my condition, other than the fact that they would very happy to insert an NG tube and do surgery. I had called my new GI before I went to the ER and she asssurred me that they would be in touch. I NEVER SAW MY GI DOCTOR THE ENTIRE TIME! I called her office and she did not even have the decency to call me back. They sent another doc in the practice who made the comment "well, maybe you should consider an ostomy... it might make your life better". How dare he say that! He has no clue what I have been through, how much surgery/medication/humiliation, etc I have been through, and the ostomy was always the last resort. I had one temporarily years ago while I healed from multiple surgeries, but with medication, I have always been able to function. I was livid! They started me on Pentassa (Never been on that one) and the surgeon could not explain to me the side effects, etc because "I am a surgeon", but the GI person never showed up to answer my questions!

As all of you who have had Crohns for a long time, know that you need to have that special doctor who knows you, your case, and can help you out, if not in person, at least by phone and now I have no one and have yet to find another GI doc in a tiny state! (My doc in PA was not very helpful before I moved) I have asked around, I work in the medical field (although I just started a new job and and my second day was in the ER), so that has really added to my stress. I had been on Lexapro and finally got off it, and I do not want to be on any more meds than needed for this stupid disease. I have had therapy in the past, multiple surgeries, numerous doses of medication, have had my bones ruined from Prednisone but thankfully was able to rebuild them, have had my gallbladder out, kidney stones, raynauds, all related to this stupid horrible disease, that no one can figure out the cause or cure for!

I am sorry to ramble, but maybe one of you out there can offer me some suggestions on how to find a new doctor that would be compassionate and helpful without it seeming like I am the bitch, just because I want to have someone on my side to care for me. I do not know how so many of these young doctors can make it through medical school with the bedside manner that they lack and their horrible attitudes.

I have good health insurance, thank god, so that is not an issue. If anyone lives in RI (there is no CCFA chapter here) or in the area and can suggest a doctor, please let me know. I do not even want to start looking again, but if I do not find someone, I will be the one suffer even more.

Thank you all for listening and for hopeful help.
BCG

 

[ruthymg]

Hi, so sorry you're having a terrible time. I can relate to the feeling of needing to see the same doctor regularly who knows your history as I too have crohns and had the same problem when I was first diagnosed, Thankfully I now see the same doctor. I'm afraid I live in the UK and so can't advise you on any good doctors where you are, but I can maybe advise on other things.

I too take Pentasa and as far as drugs go its really rather mild and quite a friendly drug. Side effects seem to be things like stomach upset or rashes or muscle aches but rarely anything serious. I have been taking it for almost 6 years and have been free from side effects.

I currently have an ostomy and am hoping for a reversal but I am awaiting MRI results to determine when that is possible. I don't really like having an ostomy and from what you say I gather you weren't too keen either. I am only 32 and have had terrible problems with my crohns including fistulas and even though I don't like the stoma, it has certainly improved my quality of life. I appreciate that your point is that these people don't know you're history and therefore can't advise you on what is best for you and at times it may even seem that they are trying to find the easiest solution for them instead of for you and that must be really frustrating. I'm sorry I can't be more help, feel free to PM me if you want to chat more, In the meantime I hope you get what you are looking for.


Ruth

 

[Jeff D.]

I am sorry for the hospital put you through that is just stupidity on their part. I don't really know about RI but I live in CT and my doctor is very good although he is a pediatrics GI. I wish you all of the best. Good luck

 

[Cara Fusinato]

I'm so sorry to hear of your struggles. I understand. My first GI doc, recommended by the surgeon who discovered my Crohn's, decided I should have a quite large resection. When I fought the idea and told him there must be another way, he told me NO and started getting very rude and very personal. Thanks for making the stress worse, right? My GP recommended me to a GI practice, I got in on a cancellation, and the doc is wonderful. 10 months after diagnosis, I am doing great, taking an alternative med. and having no symptoms. Hang in there, as your GP for a reference to a good GI clinic and specify what you look for in a doctor. Feel free to vent or talk with us anytime. We're all with you!