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12/11/2009 07:00 PM

New at this..

whitetiger09
whitetiger09  
Posts: 5
New Member

hi, this is my first post so i have no clue how these work lol. but anywho! how is everyone doing today??Wink
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12/13/2009 06:15 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

Hi Katie! Welcome to the group. Hope you're doing okay yourself. We have newly diagnosed members and members that are long term survivors of crohns. So jump in and join us. Smile

12/13/2009 09:55 AM
mycrohns
mycrohns  
Posts: 194
Member

Hello!

I am a newby too..

How does this work? recently was diagnosed with Crohn's. Prior to it, I had never heard of the disease.

have a temporary colostomy and illeostomy bag.

Will have follow up surgery to remove, aiming for January.

was on Prednisone, no longer. YAY!

Initially, Dr's wanted me to get Remicade treatments, but that is no longer needed as well. YAY to that too.

Am taking Pentasa and 6MP.

A lot to learn. I would love to hear your experiences.

I hope all is well!


12/13/2009 10:01 AM
mycrohns
mycrohns  
Posts: 194
Member

Hello!

I am a newby too..

How does this work? recently was diagnosed with Crohn's. Prior to it, I had never heard of the disease.

have a temporary colostomy and illeostomy bag.

Will have follow up surgery to remove, aiming for January.

was on Prednisone, no longer. YAY!

Initially, Dr's wanted me to get Remicade treatments, but that is no longer needed as well. YAY to that too.

Am taking Pentasa and 6MP.

A lot to learn. I would love to hear your experiences.

I hope all is well!


12/13/2009 12:53 PM
ShelbyBoat
ShelbyBoat  
Posts: 215
Member

Hi Mycrohns,

You certainly got a front seat introduction to CD. Thank goodness you are home now for the holiday and on the road of recovery from this recent flare. I was diagnosed in 2003 and was in and out of the hospital for what felt like that entire year. At one point my colon perforated and I was scheduled for surgery that following morning. During the night it healed over on its own. The Dr. said that really never occurs and I was very lucky. Back then it felt impossible that I would never feel good again. Just laying there it felt like I'd eaten glass and had been abdominally attacked by a sumo wrestler. ...But I did in time feel good again. In fact so good that I stopped my meds. I had convinced myself that I was one of those that had one time traumatic experience with the disease and it was in the past. That mindset didn't work out for me so well for me. So I'm very serious now about continually building a good relationship with my GI and maintaining my meds. For maintenance I take Remicade and during a flare we add Prednisone and medicated enemas. My disease has been isolated to my colon and really tends to reek havoc on my sigmoid colon. Remicade is the one thing that really works for me. If they do decide to put you on it, I'd be happy to share my experience with you.

In the beginning I concealed all the pain from everyone. I'm first born and I think I had this crazy sense that I was responsible for everyone and everything. I didn't want to admit to myself that I was sick let alone anyone I knew especially those that loved me. Overtime I realized that Crohns certainly gave my body something to cry about …But my mind is another story. I credit this disease with giving me a lot of grace. Grace to accept, Grace to love and be loved, Grace to truly feel for those that suffer, and to just be.

I'm working my way out of a flare now. ...and watch out world for when I'm ready to go again, I love to dream. ...When I'm well I'd like to think I live life for all it's worth and all I'm capable. Ps...thank you dad for sharing with me what that really means.


12/13/2009 03:07 PM
mycrohns
mycrohns  
Posts: 194
Member

Hi ShelbyBoat,

Thanks so much for your detailed message.

You as well have experienced agonizing pain that comes along with Crohn's. It's such a strange disease to me. It's as if your body is attacking against you.

I'm glad to hear that Remicade works for you. Your positive outlook is amazing. It's what's needed ultimately to overcome it all. Basically, it is what it is, right? so let's make the best of it.

When you have flare ups, what are the symptoms? Do you have nausea, vomit, diarrhea, etc? When i have my follow up surgery soon, that is what I'm concerned with. That i will have flare ups then. With the ostomy bags, I have had no pain. OMG, i eat like I have never ate before. Nothing is hurting me. Don't know if its from the meds or the bags or combination of all.

Remicade...my story is complicated. I went to the ER one morning with severe abdominal pains. That is where my surgeon was involved since day 1. He admitted me and got about 15 different doctors on the case. For a few weeks in the hospital, no matter what test they ran, they were not able to diagnose the problem.

One night, I stopped breathing and that is when they decided to cut me open and have emergency surgery. They would just "explore". When i awoke, Crohn's was the diagnosis with the results of the ostomy bags.

The GI that was on the case as well in the hospital prescribed me Prednisone, starting at 30mg, lowering it each week by 5 mg. As i said before, no longer on the Prednisone. I currently still take Pentasa and the 6mp (mercaptopurine). By the way, do you take 6MP? Does anyone know the side effects of it? I am losing my hair in large clumps. Every doctor says something different. Surgeon says it is from 6MP, GI DR says it could be from Pentasa, nurses all said 6MP can cause hair loss. Who to believe???? Also, he wanted me to start Remicade treatment as soon as i was off Prednisone and healed from the surgery.

Anyhow, since my case was so severe, the doctors wanted me to have follow ups with Cedar Sinai since they specialize in IBD. Went to a GI Dr. there and he said he would have never given me Prednisone and doesn't think i need Remicade. Here is the conflict: Surgeon (I LOVE HIM) and original GI saw how sick i was and think i need the Remicade still.

Had a colonoscopy and an elioscopy with xray of small bowel series. Passed it all. GI specialist at Cedars says no Remicade. Surgeon and original GI want Remicade.

Also, GI at Cedars said i can have my surgery, 1 surgery to remove both bags at same time. But, my surgeon spoke with him and convinced him that 2 surgeries to remove 1 bag at a time would be safer.

AAAGGGHHH!!! when too many doctors get involved, you get several different opinions, then you are confused.

they are all right, but what to do?

I am not having any flare ups currently, so the Cedars GI makes sense that i don't need the Remicade right now. Save it for after surgery, if down the road i get a flare up. And hello? So all that Prednisone was a waste and have gained weight from it.

Anyhow, i really admire your strong will. You should fight it and know that you are meant to do what you love to do, and this Crohn's should not be the reason to defeat you.

I do wish you all the best.

Thanks for sharing and would love to hear more!!!!

Best,

Natalia


12/13/2009 03:11 PM
Michellelynn04
Michellelynn04  
Posts: 46
Member

Welcome! This a great group! I've only been a member for maybe a week, but it's been tremendously helpful! Shelbyboat, what a wonderful way to look at everything. You seem very strong!

12/13/2009 06:04 PM
ShelbyBoat
ShelbyBoat  
Posts: 215
Member

Hi Natalia,

Very pretty name btw.

You hit the nail on the head when you said it is what it is, Exactly! We may have been delt the hand …but we still have some cards to play.

I'm so happy you're feeling good, eating and out of pain. It's the most amazing feeling to rejoin the human race again! I can certainly relate to your concern about what's going to keep you in that state. I don't take 6MP but I'm sure someone here does and can shed some light.

I find that I lose hair tapering off prednisone. Everyone responds different and some people don't, but that may be a contributing factor to your hair situation. If so …and you respond like I do, it will probably go on for a couple months and then subside. My hair thins towards the ends and is less and less noticeable the closer you get to my hairline. If it comes down to having a cut just look at it as your opportunity to sport a sheik short new you.

..Not like Brittany Spears, …just shorter, K.

When I flare suddenly every 85 year old west of the Mississippi looks like an Olympic athlete. I get a lot of cramping, constant pain in my stomach, fever, no appetite, total loss of energy. I'm total mess. Kind of like a crescendo. Once it starts the intensity of all the symptoms proceed to get worse and worse… Prior to CD I really never knew that it was possible to feel pain quite so bad.

So these Dr's have you in quite a predicament with the conflicting views. Especially being so new to the disease. At this point a lot of what you know is really just what they tell you and I'm sure it's hard to know what to do and who to believe. Just going through what you did is a lot in itself. My best advice is to accept nothing but the best, PERIOD. If you don't feel a 100% about your Dr. go to another one. I know it's a hassle but you'll be glad when you find that GI that really gets you.

I wish you the best in this beautiful life too!!


12/14/2009 11:48 AM
mycrohns
mycrohns  
Posts: 194
Member

Dearest ShelbyBoat,

I loved your message and thanks for the name compliment. I was recently living in Italy for the past three years and Natale, close to Natalia, means Christmas in Italian.. HA HA!

It's comforting to know others have gone through what I did. Your symptoms are exactly what i had. Not fun. Still can't get over how rough this disease is.

Yes, so far, since my surgery i have had no flare ups. I'm really thankful for that. It does feel amazing to be able to eat and not worry if I will have pain right afterwards. My symptoms was getting so bad, even the toothpaste from brushing my teeth made me nauseous. I started to dread food and brushing my teeth. Getting ready for the day was a hassle, I had zero energy. My family thought i had depression, but it was the CD all along. I mean yes, i was depressed. But i was sad and confused as to why i was always in pain.

As for my Dr's..I know the GI is supposed to be the main follow up and support. In my case, it has been my surgeon. He does have my best interest at heart and i trust him. having 2 surgeries to remove 1 bag at a time is not what i want to hear, but he says is the safest and less painful way...sooo....I'd rather be safe than sorry.

Thanks for the hair loss tip. OMG; for sure won't go crazy and give myself a Britney Spears do. Let's hope it won't get to that. HA HA!!! I did cut it a little shorter. These days while healing from surgery, my hair is always pulled back in a ponytail, so it was getting knotty. No need for long hair when it's always pulled back. I have noticed since i cut it, less hair is coming out, so that's a relief. Once my surgery is done and over with, I have time to grow it out and let it loose like it used to be...AAAGHHH!! Cannot wait!

At least i am not in pain, knock on wood. And that right there, defeats anything else.

You have an amazing spirit about this all and I hope to learn from you.

You said you are working your way out of a flare right now? Are you feeling better? How long do they last? What do you think causes it??

I do hope you are well!!!!

Best Wishes!

Natalia


12/14/2009 04:42 PM
ShelbyBoat
ShelbyBoat  
Posts: 215
Member

Hi Natalia,

An Italian Christmas. I love it and what a fun way to discover the meaning.

Somewhere close to June of 2008 I stopped taking Remicade. Till then it had been working well for me but I was honestly embarrassed by taking a half day of sick leave every other month from work to go get my infusion. It drew a lot of attention from my co-workers and felt like a fiasco. I also felt really good and hadn't had a significant flare since I was first diagnosed back in 2003. In my mind I thought I was in the few that didn't need a maintenance drug. So why was I subjecting myself to infusions anyhow? How nutty of me.

Needless to say I found myself in a terrible flare around April of 2009. By June I was in the hospital looking at surgery and a permanent colostomy. My Dr. offered me one last option and that consisted of: reinstituting Remicade, Prednisone, Flagyl and last but not least going home with a PICC line and TPN which is total bowel rest and nutrients via infusion for two months. It was a last shot to try to medically get things better. I took him up on it… You'd think it would be totally degrading to be hooked up to bag half the night to eat. It was weird alright not eating by mouth for two months but in its own way I was totally relieved to know my body was finally getting nutrients.

Things started getting better and by August I was back in the gym. My gym has a competitive point system based on weights lifted, aerobic activity etc. I was so proud of myself that during my first month back I rated in the top five. It felt like an awesome accomplishment knowing that two months prior I was so ill it took all my might to move one leg in front of the other. ..but the Crohns was still lurking I was having all my same symptoms but just much more mild. I kept thinking that if I could just make it to my next Remicade infusion things would be ok. ..See for me, Remicade is the one thing that works. I'm convinced that as serious as my case is, it would be tenfold worse without it…

On an October morning driving to Pilates I started getting very severe stomach pain along with nausea. I turned the car around came home and spent the afternoon in out of the bathroom. It was back full force. …and I've been fighting it again since. My next appointment is Thursday. Just prior to Thanksgiving my GI did a colonoscopy. Things according to him looked much better than they had in June. He doesn't think I'm at this point a candidate for permanent colostomy but he does think I may be on my way to my first resection. Of coarse I know that the manner in which this disease presents itself ..things can quickly change. At times this disease can be unrelenting.

The short of the story is my latest flare occurred because I stopped taking my medication. ..Remicade is an amazing drug and works wonders for me. However, once I'm in a bad flare even it doesn't miraculously make me better. It's a long road of small improvements and often backslides. A little like trying to close Pandora's box. (..Ps, nurses come to my house to give me Remicade now which is awesome and they work on weekends and it's covered by insurance. Wish I would have known that kind of service existed years ago)

Certainly there are days that I'm sad and I cry. ..And I think that's healthy. But how truly fortunate we are that along with bad days we very often have long time frames of good days. There are a lot of folks out there with worse lots than ours. Might as well feel lucky for what we have.

I'm curious to know if you get to pick which bag goes first? Is one worse than the other?

Merry Merry Christmas!!!

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