Diagnosed in July this year, 2006

[Georg]

As the title says I was diagnosed just a few months back in July. My story goes like this:

I was living in California and had terrible stomach pain. Went to the doctor and he said it was IBS. I walked around knowing now that my pain was just IBS. I took fiber pills and thought they might help. The pain got worse. So I went back to the doctor. He gave me anti-spasmotics like Bentyl and Levsin. I talked myself into thinking they helped a little bit. The pain wasn't as bad. (Sure)

Went back to the doctor and told him that they might help a little but I've still got pain and I was also passing blood in my stool which was really loose. The doctor sent me to get a sygmoidoscopy. The lady shot the camera up my rear while I was wide awake and watched on T.V. The worst feeling I've ever had in my life! I HATED IT! And that's stating it too lightly. She didn't find any abnormalities in the left side of my colon, so she recommended I stop eating dairy, carbonation, cafeine, fats, sugars, etc. So I changed my diet thinking that will help this IBS.

A year went by and I moved to Texas. At my new job people started to comment on how I looked like I was losing weight. "Oh, it's just because I eat only salad, chicken, fish and pasta now that I'm losing weight. And the pain you see me doubled over in is just IBS.

To make a long story short, I went to a doctor here in Texas who tried me on probiotics and fiber until I went to him one day and said, "O.k. We're going to get to the bottom of what's wrong with me. I've lost 30lbs., I have diarrhea constantly with blood, I get dizzy when I stand up."

He did blood tests. He found I was EXTREMELY anemic. I was scheduled to see a specialist, colonoscopy and blood transfussion. I was walking around cronically bleeding for so long I'd forgotten what it felt like to feel normal until that transfussion. Wow! I had energy again!

After the colonoscopy and bowel X-Rays I was diagnosed with full blown Crohn's in the worst shape my doctor has seen. It was neglected for way too long.

Since diagnosis I have been in and out of the ER due to pain I couldn't contain with Hydrocodone. I'd get Morphine in the hospital. They'd also give me steroid in the hospital. Which, now I'm taking 40mgs. of Prednisone, 125mgs. 6MP, 4 Asacol 3 times a day, I've been getting Remicade infussions every 6 weeks and nothing has really helped except for the Prednisone.

So I am now at the point of trying to reduce the Prednisone and trying Methotrexate, another drug the doctor wants to try since Remicade doesn't seem to be working like we'd hoped. If I can't get off Prednisone to keep me out of the hospital, then we've already discussed surgery and I've met a surgeon. I would have a right Hemicolectomy. But I'm going to try everything before that. Next step might be Humira. I Don't Want Surgery! They would take about 5 foot of Colon and 1 foot of Ilium. Sounds scary.

I appreciate reading from people who have had this type of surgery. Because, as my doctors have said, it may be too far gone to save at this point and we're running out of options.

Sincerely, and thanks for taking the time to read all that,

Georg

 

[andilynn09]

I was diagnosed in April and am still trying to figure out how to control the pain without the prednisone, so try not to get too discouraged about it not happening right away. It sucks, we all know....but try to stay positive and keep trying whatever options you can. Sooner or later, something will take...that's what I keep telling myself anyway.

I can't help you in regards to the possible surgery, I am not at that point yet either...just wanted to say you've found a good place and we're glad you're here. :welcome:

 

[skeet]

Aloha Georg and welcome to the forum. I just hate it that diagnosis seems to be such a problem for so many. Precious time lost while the docs are scratching their heads & the patient is getting sicker and sicker. So sorry you've had to go through that. No advice from me, just an empathetic shoulder and good wishes for finding the best possible solution for your future health!

 

[Ruthg]

Hi Georg, welcome to the forum. I had surgery in June this year for the first time although I have had crohn's for about 11 years. I had a right hemicolectomy and a loop illeostomy. I too was really scared, I was worried things might not go to plan. I also worried for my 2 children, not nice seeing mum in hospital and all that. Anyway, the outcome was really good, took a couple of weeks to get well again but feel much better for it now. The only thing I wouldn't reccomend is the epidural for pain relief. My first week of pain relief was horendous. The epidural fell out after 2 days and I was in agony, so they put me on morphine which just made me throw up all the time, eventually they gave me tablets for pain and they did the trick. Other people may reccomend epidurals but I don't, had terrible back ache after it too. Anyway just wanted to say that if surgery is the only option left, that its not too bad. Be brave, and hope all works out for you. Keep us posted.

 

[Cara Fusinato]

I, too, was described as "the worst case I've ever seen in a person living or dead in [the surgeon's] 30 year career." Creepy! One GI doc wanted to cut it out, I battled through and haven't had surgery yet. However, I am not nearly as extreme as you are. My thoughts and prayers are with you as you make the decisions . . .

 

[healthycookie]

It make me crazy that everyone has the same story. These doctors are meant to be specialists in this field and yet, no one gets diagnosed until they are near death. Horrible. Though, as much as it sucks having a disease with no known cure yet, I found it comforting that at least there was a name for it at last.

 

[Georg]

Remicade & Methotrexate

Do I even t try it? Won't it take a month or more for Methotrexate to even show signs of improvement? Remicade hasn't shown any. I'm really leaning toward the operation. I can't go on another month like this in hopes that it actually works for a change and if it doesn't I'll have to get the operation then anyway. By taking away only 5 mgs Prednisone, I feel terrible. So I don't want to be on those another month or more either. It's hard enough decreasing the levels slowly.

I've only been fighting this disease for 3 months, and I'm already tired. I give up. Take 'em out!

The real discussion is whether pumping drugs that lower the immune system and can have serious, even deadly side effects, into the body is worth the risks when there's no guarantee they'll even work without surgery. It's a tough call. I feel like I'm pushing my luck by adding even another immunomodulator to the already 6MP. Then of course there's the Remicade to add to it. Then what if I try Humira? When is enough enough? When do I just give up? Do I press on? Wait for something to heal it? To kick in? Or give up or give in?

 

[Kev]

Hi Georg.. Welcome to the Forum... I've had the surgery.. it's really no big deal. It's also a permanent decision AND no guarrantee it will cure you (permanently). I just want you to have a heads-up that surgery is not an option to be taken lightly.
If you trust your doctors, AND they tell you it's your only hope, or your best choice,
then the ball is in your court.. If its just that it looks so appealing because you're sick & tired of being sick & tired, Well.. I commisserate. Been there, felt that. BUT,
I was told my op would be a cure.. Op was childs play, a complete success. But it wasn't a cure.. now I'm back where I started from, only with less colon in reserve.

Now, if you ask 6 other members who've had the op, you'll probably get 6 differing
opinions.. I just advise really thinking over any big decisions before making them..

 

[Valentina]

Do I even t try it? Won't it take a month or more for Methotrexate to even show signs of improvement? Remicade hasn't shown any. I'm really leaning toward the operation. I can't go on another month like this in hopes that it actually works for a change and if it doesn't I'll have to get the operation then anyway.

sounds like a direct quote from me over a year ago
the remicade and mtx mix is the only thing that ever worked for me at all.. and not right away, I think by my 5th remicade infussion, and a couple of months of mtx shots every week, then *poof* sugery avoided. this was also my last try before they cut it all out.
so I say go for it.. what have you really got to lose? well, besides a bit more time, and feeling like total crap.. but surgery isnt a guarantee either. just my advice/opinion on it of course
oooh, and hi! welcome to the site! lol

 

[Ruthg]

I haven't had the remicade but my doc wants me to have it. I have as mentioned earlier had surgery tho. You say you 've had 3 months of this? don't give up so easily, there are people here who've had years of problems before they finally move into remission. You seriously need to be a bit more positive, you're stressing yourself out, not good, will make things worse. Surgery should be the last resort, there are still risks of further probs after surgery. Just out of interest, I too was told I had a bad case of Crohn's and that I should have been diagnosed sooner as the disease was now advanced. I was also told initially that if the swelling didn't reduce I would have to have surgery. That was 5 years ago. I waited and had 3 years of remission, totally symptom free before I actually had to have surgery. Be patient, your time will come. If however your surgeon says there is no other option but surgery then so be it, be brave.


Ruth

 

[Skinsfan1229]

Remicade and Methotrexate combination has shown to work better then either drug used alone.

You feel worse when tapering the prednisone because our body makes natural steriods but because we take them in oral form our body steriods shut down so we dont get overeloaded...well our bodies should start making the natural steriods again once you get tapered down to a certain point, usually for most people around 15mg, sometimes it doesnt kick back in though, and you might have to go back up to 20 or 25 and taper more slowly the rest of the way. this usually fixes it, I've also found that when I started at 40mg and tapered i couldnt come off the steriods but if i started at 60mg and tapered then i could come off fine.

The steriod you got in the hospital was salumedral.

I dont particularly like morphine, its not strong enough for me, and they'd have to give me to much for it to do anything, not to mention it makes me feel claustraphobic, I get daluaudid when going to the ER.

Welcome to the Forum, I look forward to hearing more about you and how your doing.

 

[Georg]

Surgery Has Been Scheduled!

Doctor says nothing's working. I am scheduled for a laparoscopic Right Helecolectomy at the end of this month. Also, another colonoscopy next week and then pre op a few days later, then the surgery. I can't keep on Prednisone and that's all that does any good. I'm weening off Prednisone now, down to 30 mgs. I thought the Remicade and Methotrexate helped, but the pain has been really bad. It's weird because the D has been really better and not so frequent or urgent and actually sometimes feels normal. But the pain is so bad he says it's not getting better.

I wish I could wait and keep trying, but I really want my life back too. But what if I go on for another couple of months and I do start to heal up. I've only had 4 Remicade infussions and only 3 Methotrexate. I hope we're not jumping the gun.

Thanks for all the support.

Georg

 

[alan]

There is an answer to CD. SCD, The Specific Carbohydrate Diet. We've found that SCD plus a powerful probiotic called probactrix works. PLease check out theses sites before you head down the surgery path.

Alan

 

[Karen]

WELCOME ABOARD ... I am sure that you will find the awnsers that you are looking for here & I will pray for you that you will find the help that your looking for too.