My journey so far

[gasman99]

So I started having symptoms in August of 2009 and was sent to the hospital for possible appendicitis. When the CT scan came back negative for that, I was referred to a GI Dr. Since then life has been interesting to say the least.

The first thing my Dr did was schedule a "C" scope since they saw intestinal swelling on the CT scan. That 1st one didn't go so well to say the least. It seems I am very hard to sedate and since I wasn't in an OR they couldn't push as much medication as they wanted to to keep me from feeling the pain, which by the way is quite intense. Needless to say they didn't finish the test. After that I was scheduled for a second one but had a barium follow-through prior to that. That test showed the more evidence of swelling of my small intestines and the terminal illium. The second "C" scope went fine with no complications and again showed the same thing with "massive inflammation" of the small intestines. I was scheduled for an enteroscopy after that with the same results as the 1st. However, they kept going and I have no memory of it thanks to the Versed. The last test they did, and I wish they started with it, was a capsule endoscopy. That was so easy but I have yet to get the official results. Should be getting them today. Along with the normal tests I think I have been tested for every intestinal parasite known to man. This is only due to the fact that I travel extensively in Asia and have eaten some weird things and the sanitation at some of the places I visit is lacking to say the least. All came back negative.

In between all these tests I have been hospitalized 4 times due to complications for about a week at a time. Basically they put my on IV steroids (solumedrol) and pain meds plus a nice liquid diet. Right now my Dr.'s are debating on whether to proceed with Remicade or Humira.

Current medication:

4,000mg/day Asacol
130mg/day prednisone
Nexium
975mg/day Tylenol (joint pain from steroids)
tramadol (as needed for pain)
percocet (as needed for pain, rarely taken)

I should be getting off the prednisone today and moving back to Entocort but not sure yet. It seems that it is a never ending struggle just to get answers and a course of action on how to deal with this diagnosis. Being that I am active duty military, my options for different Dr.'s are limited to say the least. Where I am stationed there is only one GI doc for the whole island. So there is the short version of my story.

:depressed:

 

[PeninsulaLil]

Yikes! Hang in there gasman! From all our stories on this forum you can see you are not alone. These diseases are difficult to diagnose. From the meds you're on and the tests that you're getting, sounds like you're on the right track at least.

One thing I have also discovered is how important it is to be an informed patient, regardless of if you have only one option for a GI or live in a urban area with major hospitals. Places like this forum and ccfa.org have lots of great information. I also first saw my GI in August and got the 'official' Crohn's diagnosis after a colonoscopy on October 30. I am really appreciative that my GI takes time with me and will answer all my questions, even when they are about different treatment modalities than he is recommending. His willingness to listen and talk with me makes me trust his judgement more. But it is also clear that I have to make the final decisions about my own care so I figure the more I know, the better.

Let us know how you're doing.

Lilly

 

[gasman99]

Thanks for the reply. I just got back from a very frustrating appointment with my Dr. He is reluctant to place me on any additional meds right now but I do get to continue tapering off the prednisone and should be on Entocort in two weeks or so. Yeah, I joined this just because it can be difficult at times and it's not a "normal" disease that most people know about. I hope to be a regular here.

 

[Astra]

Hi gasman
and welcome

Thanks for sharing your story, and it's all so familiar! And what a high dose of Pred you're on! hope that goes well and kicks in
There are threads on here about Humira and Remi, everyone has lots of success with them, my doc has okayed the Humira for me too.
I tried Budesonide (entocort) but it isn't as strong as Pred and didn't do anything for me, but we're all different and respond differently!
See you around the forum
lotsa luv
Joan xxx

 

[gasman99]

Astra,

I was wondering about the pred myself. I am actually tapering down from 180/day right now. The side effects are insane to say the least. I have about two weeks until I go back to budesonide but I have ad mixed results with that in the past. It worked for about 3 weeks and then I had a massive flair. I just need to get off the steroids, they are wreaking havoc with my body. I used to be extremely active (I live on a sub-tropical island and am a beach bum) but now I have no energy and with the weight gain there is no way I will go to the beach.

It's reassuring to know that I'm not the only one that has had problems coming up with a treatment plan. I just didn't expect it to take this long and there is still now solid plan. I guess it's normal to get frustrated constantly. Has anyone had a problem with being depressed when dealing with this disease? I am having that problem right now and was just wondering if it is normal. I heard the meds can have that effect also but I just want to know what other people have been through.

 

[Astra]

Hiya

Yes Pred wrecks your psyche alright! But with such a massive dose, I would've thought it should've kicked in by now! I was on 40mg at the beginning then tapered by 5mg each week, what dosage are you tapering by? I'm just wondering how you will manage that in 2 weeks when you're on 180mg now?
On 40mg, I was wizzing with loads of energy! Couldn't sleep, up all night, so I'm surprised you've no energy at that dosage. Only when I got to 5mg did I hit the deck with fatigue. Maybe it's time to talk it through with your doc? I felt a little depressed on low dosage, but was very happy on high doses!
I've been depressed in the past, it's a horrible disease that wrecks your lifestyle, but I believe once your flare is under control, and you're able to manage your Crohns, by whatever means, there should be no reason why you can't live the life that you did before! And hit the beach!
I'm not unduly worried about my weight gain anymore, I'm just made up cos I've got no pain!
hang on in there!
xx

 

[Hedgehog]

Welcome Gasman and sorry you're having a hard time right now. People do get sorted with a treatment plan eventually but from what I've read it can sometimes take a while to get it just right.
I think it's entirely natural to feel depressed when you're so poorly. And I think the Pred can cause mood fluctuations too - you're on a high dose so it's maybe contributing to your low mood.
Hang in there. You will find the light at the end of the tunnel. Meanwhile there are lots of people here to support you.
Let us know how you get on,
Gail
xxx

 

[gasman99]

I am tapering down to 70 a day and then switching to Entocort, well that's the plan. I just talked with the Dr yesterday and he wants to stay on the current course since it seems to be working. I am going to see my GP today and ask about the depression thing though. Along with that is the insomnia, but that comes and goes. I was told the steroids should make me feel great but they've done the opposite. The one time I was off them for about a week I felt like a new person. I enjoyed everything again but then I flared again. Just hoping that I can continue this taper without another flare and just do the maintenance Asacol.