Sort of Diagnosed, Confused

[Christy]

Hi everyone. I am so confused right now ... and I'm sorry this is so long.

I'd had, over the last two years, a few 'episodes' of pain in my lower right abdomen which I ignored and they went away (they were just pain ~ no diarrhea, no fevers, no nausea, etc). Then (this past October) the pain came back again and after 5 days got very much more intense, so I went to the ER whwere they said "Appendix!" and rushed me into surgery.

The surgeon commented after the operation thathe did not like the look of my bowels ~ that the end of my small intestine looked reddened and that he believed he felt firm places on my cecum, that there was alot of inflammation in the area and he recommended a colonoscopy after I'd healed up from the surgery. He sent me home on cipro & flagyl, which made me incredibly ill; a week after that course of them ended, I began having diarhea (which I had never had before) and a fever, so they put me back on the antibiotics for 2 more weeks. The diarrhea went away immediately, but the inflammation and tiredness lasted.

Finally, had a colonoscopy on 12/15 and they found a benign 'fatty tumour' near the cecal valve and one of the 6 biopsies the surgeon took showed signs of granuloma. He (tentatively) dx'd me with Crohn's, gave me a 'script for Asacol (which I didn't fill as I couldn't afford it) and a referral to a Gastro-Doc, who was on vacation for the holidays. *sigh*

While waiting for my appointment (from 12/15 when I had the colonoscopy until today, 1/13) I ave been getting better. The pain in my lower right went away (except for if I mash down really, really hard on it), I've had no fever, no diarrhea, my appetite came back & I've been eating anything & everything, the 'swollen-y' feeling in my gut is gone, I have felt normal.

So ~ this is where my confusion comes in: this Gastro-Doc looked briefly at my records and announced that it didn't matter how I felt, I needed to be on prednisone right away for 3 months and then he wanted to have me on imuran and pentasa. This seems .... I dunno ..... awfully radical to simply jump into steroids and imuran first thing, especially since I feel well. When I expressed that, he accused me of being in denial and scared me half to death by implying that if didn't start the prednisone NOW then I would soon be in the hospital with a perforated intestine. *yikes*

Now ... I could be in denial ~ it's possible, I'm kinda upset and scared and whatnot, maybe I'm not recognizing the seriousness of everything. But ~ gosh, from all I've read (and I've been reading ALOT) this just kinda sounds like a harsh way to start out. I'm not looking for medical advice here ~ I'm just wondering if this is a normal way to begin??

 

[Pirate]

The steriods are pretty much standard as a first treatment. It is probably the quickest way to get any imflamation under control. There will be times when you feel pretty good and think things are okay but it still can be there lurking.
I am going through that phase right now. After 4 months of pain and agony I am finally feeling better and eating like a horse. But I still have to start on Remicade because I can't take any chances.

As far as the GI scaring the hell out of you, not right. He needs to be a little more compassionate because this is a very scary thing for new Crohnies.

 

[Christy]

Thank you for the reply, Pirate.

I'm glad that you are feeling better & eating!

 

[imisspopcorn]

:welcome: Christy...This is an excellent place to learn about treatment, and peoples experiences with these meds.


It is totally normal to be in some sort of denial...The course of treatment sounds perfectly reasonable to me. The way this disease is being treated is changing. I am somewhat surprised about the Imuran, but not really.....Think things over...I started out fairly mild (at the time it didn't feel mild) but got progressively worse. This disease affects each one of us differently....

I am glad you are feeling better now. If you have any other questions just ask.

 

[Cookie]

Hi Christy,

Welcome to the forum. I understand how you can be a little apprehensive about starting such an aggressive treatment, especially when you are feeling well. But keep in mind that if your problems are left untreated, they will probably get worse. While the suggested treatment does seem a little extreme to me given that you are feeling well, I would trust that your doctor is the best person to make that judgement based on what he saw during your colonoscopy. If you really are in doubt, I would definitely seek a second opinion. I'm not sure where you are located and I'm also not sure how things work in other countries, but here in the US, you have a right to your medical records and your doctor has to transfer them to another doctor at your request. Maybe you could request the results of your colonoscopy (should be photos and possibly biopsies) be forwarded to another GI, so you will not have to go through that all over again. Good luck and I hope you find the answers you are looking for.:hallo1:

 

[Crohn's 35]

Hi there, and welcome. You have been given some great insight and help here. I started on Pred too in very high doses. You could be inflammed and the doctor wants to catch it before it spreads. Like Pirate says he needs to be more compassionate, and explain more in detail. Entocort is a great mild to mod drug to be on too but, it is very expensive as well and only in milder cases.

If you need a second opinion or a better Gi it may be in your best interest. BTW I think everyone here is in denial in the beginning but that will change in time. Dont let it take over your life, but you can't ignore it either. We know how you feel! Hope you get relief. Hang in there.

 

[shazamataz]

Welcome!
I'd say if you are unsure to ask more questions. I can't imagine they would give you the meds if they didn't think you need them!

 

[lancelot]

Hey Christy! Welcome. Yea, sounds like the G.I. is lacking on the bedside manner...this is pretty typical for these folk in most places. In my neck of the woods, once they have a Dx of Crohn's, they will start with prednisone, then pentasa or imuran to get you off the prednisone, then if that doesn't work, it's remicade or imuran all the way.

I'm not an advocate of jumping around from specialist to specialist..but if the first guy is a jerk...on the other hand, you could book a follow-up appt. with him and let him know that you felt that he was a little confrontational, and that this is new with you?

Hope this helps some? There is a light at the end of the tunnel when you nip this sucker in the bud early

 

[tamesis]

Welcome.
I can deffinately understand your confusion, sometimes it's hard to make these decisions, especially when we feel we're doing fine. As others have said, don't feel afraid to ask questions, or for a second opinion if you feel you need it.

 

[farm]

:welcome:
I think denial is part of the process.

 

[CrohnsHobo]

Welcome Christy. It can be hard to get a clear diagnosis. I have had this for over 15 years and yesterday had a serum test to determine if I actually do have Crohn's, UC, or a combination of the two.

I wouldn't worry about the Pred or the Asacol. Both are pretty standard.

 

[crazycanuck]

Well I know with a lot of doctors the steroid drugs are an automatic first step to get things all settled down in there and then mantience drugs after that. This wasn't the case with me. I started just on Asacol which well was a waste of time for me....that doesn't mean it would be for everbody though. I'm on Imuran now and its working quite well I think. For him to say if you don't take this you'll be in the hospital again is quite ignorant in my opinion. He has no idea how or what you'll feel like if you don't take it....it varies between every person and there is no way to tell what will work for each person. With that said just because your feeling well does not always mean your intestines are doing well. Because of my Asacol I was on for 2 years it left a large area of me colon untreated for that entire time as Asacol does not help that region out. Through those 2 years I did feel better at times yes but it was obviously just false hope and the new doctor I switched to explained to me that this is probably the reason my condition has worsened in the are I mentioned before. He may have a very legitimate reason for telling you that but again we are all different and I don't know enough about all these meds to tell you what circumstances each one is meant for. Good luck with everything and I hope you continue to feel well.

 

[Nytefyre]

Welcome Christy,

Sorry about your docs crap bedside manner. I had to recently fire my doc for the same reason. Steroids are used frequently at the beginning and throughout treatment. Of course, your doc can't make you start the 'roids if you aren't comfortable with it. Hang around the boards, there's a lot of great info!

 

[Christy]

Thank you, each of you, for the warm & lovely welcome! I really appreciate all of the input.

 

[kenny]

If you have access to getting a second opinion it might be worth it. You don't want to play one doctor off another but you might want to see what other options are open to you. Remember they all have to get along as colleagues within the field. But I have seen a big difference in treatment methods used on various people around here. Everyone needs to be treated individually but there is more than one way for each of us as well.