Time for a new doc?

[marichino84]

I wasn't sure where to put this post, so I started a new thread - hope that is ok.

I think I need a new GI. 3 years ago he did my endoscopy/colonoscopy and found my ilium to be inflamed. Biopsies came back fine & no granulomas. He said its possible that it's crohns. I have had "mushy" to "watery" stools the majority of the last 8 years. I really don't have a bad diet. I eat veggies and fruit & lean meats and try to stay away from "bad" food. I get periods of time when I have stabbing pain in my upper/middle abdomen with varying intensities.

I was on Pentasa for a few months after the scopes, and my pain went away (other than here and there - nothing long lasting) & I was mostly fine for the last 2 years other than the mushy stool. This May I had SEVERE pain one day and almost went to the ER. I decided to go see the GI again, but he couldn't see me until mid July. Since may I have been having off & on pain (& of course crazy poo). I saw him & he gave me Entocort to take for 10 days. He said if it helps then most likely it's an IBD like crohns. It helped, my stools were actually solid!

Well they didn't realize I didn't have a prescription & then it took a week of me not taking any before I could get a script. I started taking them again Saturday. However, last Thursday I started having tummy pains and D again. I stayed home from my camping trip because I felt so yucky.

Sunday i almost didnt make it home i had to go so bad. Monday night I was doubled over with pain. Tuesday, same. Both days no stool. Wednesday, I had sharp stabbing pain in the upper middle and right abdomen, like in my rib cage. It was hard to have a BM in the morning, and then diarrhea 4 times in the afternoon. Today I cant go (other than a small amount this morning) even though I constantly feel like I'm going to have an accident. Still have sharp stabbing pain, but it's worse when I eat/after I eat. and I've been nauseous & not very hungry & lost about 5 lbs since last week.

Yesterday I called them & asked if it could be the Entocort. They called me back today (had told me not to take today's dose). They said if I didn't want to take them I didn't have to. Or if I wanted to continue, I could. REALLY???? Also, I should add more fiber to my diet. FIBER. When I eat too much fiber (I.e., a piece of lettuce, etc) I have severe pain & can't get off the toilet. I do not think my innards need to be scrubbed right now.

I am going to take the Entocort for another week to see if anything changes, but in the meantime I really feel I should get a new doctor considering he isn't doing much for me. I feel terrible like he just brushed me off or just isn't taking me seriously, and then that makes me feel like I must be overreacting. :ybatty:

Sorry for such a long vent.

Any opinions or suggestions on finding a new doctor?

 

[tots]

marichino84-

I am sorry you are having trouble. Nothing like feeling your Dr gives you meds just to shut you up or not taking you seriously.

Your story sounds very similar to mine and prob many others here in symptoms and treatment from your Dr.

I would keep up the Entocort. It dosent work as fast as prednisone and the one week break was enough to let your symptoms "break through".

Feel better soon and listen to your body!!

New Dr- always a good idea to get another opinion and another and another!! If you like the new Dr better stay with him. Most ins co's will pay for a second opinion.


Lauren

 

[Thermo]

Hi sorry things suck right now, I would switch to Prednisone, start a low residue diet, switch doctors and setup some scopes and scans. I am no doctor but it sounds like are starting to get obstruction symptoms, do you often get bloated or feel full a lot of times?

 

[marichino84]

Thanks!

Well usually I'm hungry all the time (when I'm not having stomach pains). But for the last week in particular, I just feel very nauseous (haven't thrown up), sharp pains in the upper abdomen, bloaty, and in general not very hungry (but when I am I get full quickly). And for the last 3 days I constantly feel the need to go but really can't. That is highly unusual for me.

I've made an appointment request to see an Internal Medicine doctor. He works a lot with digestive issues and I'm hoping he will be able to think a little more outside the box (& not be limited to cut & dry diagnoses - I think my current GI is stagnant because he keeps looking at the symptoms & not getting anywhere because I have some but not all of an IBD). Currently I'm eating a lot of white rice, noodles, etc. TONS of water.

 

[tots]

Unfortunalty there is no classic set of symptoms we all
have ! That's why we are so fun for the medical community !


Lauren

 

[michaelearnest]

Well said Lauren

 

[Thermo]

Don't feel bad getting a new doctor, I have gone through 4 GI's and I will switch again if my current doctor ever gets complacent with me or my disease. Managing a Crohns patient is a pain for doctors but its their responsibility. Keep up with the low residue diet, look it up online there are some great meal ideas out there, just watch your portion size and make sure you eat small meals throughout the day until your next meeting with the doctor. I went 7 months on the low residue diet and only lost 15 pounds so it's not too bad.