At wits End!!!

[Retselth]

Hi,

I am a 38 year old male. I have suffered with Ulcerative Colitis and Chronic Crohn's for about 15 years but only diagnosed and treated for the past 4 years.

My specialist's have stated I have a very difficult and tricky case of Crohn's and up to this point they seem to be at a loss regards to controlling it. I am constantly going through very bad flare ups, pancreatitis, tendinitis, etc, which in turn has limited me in maintaining any quality of life or financial peace of mind. It has diminished any social life and is a strain on my family.

Through the process of elimination I have discovered I cannot process red meat and certain other processed meats. I have been on such drugs as Prednisone, Imuran, Pentasa, Asacol, Flagillyn, Cipro, and Nexium. These drugs seem only to mask the flare ups, but never put me into remission for longer then a few weeks causing me to always be home sick instead of working.

I have given up a career in transportation and assumed one in automotive parts as it is a little easier on the body. (Regular 9 to 5 Mon to Fri job)

Just recently, I asked my specialist what if any, my surgery options are. I was told due to having such a difficult case of Crohn's on top of the Colitis, there were no options at this time and they really cannot do anything for me.

I cannot accept there is no more to life then constant pain and poor finances. There has to be some answer out there. Does anyone have any suggestions or ideas I could mention to my specialist?

I am truly at my wits end,

Please Help,

Retselth

 

[Crohn's 35]

Hi there welcome to the forum, another fellow Canadian too. Your life seems alot like mine only I am female, minus Pancreatitis . You have been on all the drugs I have been on. I am surprised your Gi didnt mention Remicade or Humira. Some severe Crohns do well on Remicade. If it has been mentioned and he doesnt think you need surgery, I would try to get another Gi. I have seen a few GI's and unless they specialise in the GI tract (not an internist) they may not know how to treat you.

I realize being in Canada times are long for waiting periods but I would try to seek a second opinion, fresh eyes and knowledge can help. No one should suffer.

Where exactly are your affected areas? Perhaps we can suggest our experiences in the areas you are affected. I wish I could find remission too but I am not giving up. Even 13 weeks of Methotrexate isnt working for me, but I am not going to let this beat me... hang in there we know exactly what you are going through. Let us know what you decide. Good luck .

 

[MapleLeafGirl]

That doesn't seem right to me that they can't do anything more for you. I have never heard that from anyone else. It doesn't sound like they have tried Remicade or Humira or any of the other newer drugs. I would definitely get an second opinion or a third if necessary. There are lots of others from Alberta on here so maybe they can recommend a doctor.

 

[Mike]

When a doctor tells you there is nothing more they can do for you, try another doctor. I'm sure there are reviews and ratings of local GI's in your area.

 

[Sidders]

I've had my own doc tell me that he didn't want to operate but only because I was so young at the time and they didn't want to start taking any of my intestine until they had to, but I've never had a doc just say, oh, sucks to be you and we can't do anything more. I would get a second opinion.

I know it really can seem like you'll never have a good life again, but you will. I remember times when my bowel was obstructing and I was so miserable that I thought about ending it all. I'm glad I didn't because there is more to life than this stupid disease. It can be all-consuming but hang in there.. and go see another doc!

 

[Astra]

Hi Retselth
and welcome

that does sound a bit crazy, I'm sure there's lots more they can do, such as a biologic like Remi, My advice? get a second opinion, pronto!
keep us posted, lots of support here
lotsa luv
Joan xxx

 

[Silvermoon]

I have had the same experience as Sidders... health care providers nat wanting to operate due to age. And in retrospect, now that I am older and more mature mentally, in some ways I wish I wouldn't have gone through that "extra" surgery, and maybe tried to find a better way to deal with it. Surgery does have it's own complications... you only have so much bowel to cut out, for one. And everytime an "injury" is made to the bowel, our Crohn's like to cause complications around that (ie.stricturing, "attacking" the weak spot that has know been made).

That being said, I understand the frustration of waking up every morning in pain, and being "sick and tired of being sick and tired" all the time. The way I have started to look at things lately is: write it down on paper... weigh the pros and cons. Yes, there are meds out there that can help ease all of our symptoms in one way or another.... is it worth taking all those meds? If you go the surgery route, studying the research, very few Crohn's patients go longer than about 8 to 10 years before they have to have surgery again.... is this enough time to do what you need to do? Does it give you that quality of life for that time that makes it worth it?

It is difficult to deal with someone (ie a doctor) who has never had to deal with this stuff on a personal level, so yes, I encourage you to seek a doctor who fits your needs. We have some of the best GI's here in Alberta.... getting to see them is a whole other issue, unfortunately.. ... but DO keep trying....

I know this post has no answers for you, but a few of us have been there, and are here to listen when you need an ear (or an "eye" as the case may be... lol :redface: ). Keep trying, and don't give up.

 

[Retselth]

Postive Remarks

Hey guys,

These are some of the most positive remarks I have read or heard in such a long time. There is so much doom and gloom associated with these diseases. I will see my family doctor in the coming weeks, explain the situation to him, maybe even write him a detailed letter as a 10 to 15 minute appointment is hardly enough, and request a GI's opinion.

With that said, the clinic I have been going to over the past few years is set up as a team, one internist, and 3 surgeons. They meet and discuss complicated cases as a group. I have also dealt with a specialist in Edmonton named Mckaigney at U of A several times as well and he also seems stumped.

But under all of your advise to try to move forward, I can't lose I guess. Thanks so much. Maybe I will keep you posted for others that follow.

Retselth.

 

[PeninsulaLil]

Please do keep us posted. We want to cheer with you when you feel better! I have relatives in rural Ontario with a child with SMA and more than a few times, his dad has had to actually train hospital personnel at the local hospital on certain procedures. Really! So keep being persistent in finding the right doc and support.

Lilly

 

[MAD]

Hello Retselth, I also have Ulcerative Colitis and Chronic Crohn's, I asked my doc the other day were my Crohn's he said it was in my large bowl. But until now i have not seen anyone on here thats got the same! is yours in your large Bowl??? I have had all the signs for over 20 years but only diagnosed in October 2008 when i went to the hospital for a week, since then I had to stop work for a bit over a year trying to keep the pain at bay as my pills messed with my head alot. I am still on Prednisone, Pentasa, Purinethol and Codeine and Centrum Multivitamins. It has been really hard to get a job in New Zealand when you have got to tell them, My first job started today so I hope i will not get to stressed out at any time as that brings everything back very fast. I HOPE IT STAYS WAY THIS TIME. I am tappering off Prednisone after 1 half years, so I am scared about loosing any more weight as the predisone is the only thing keeping it on. I can not afford to loose any more I'm 5foot7 and only 47kg all skin and bones.
Good luck with everything hope you get better soon.

 

[Retselth]

Mad

Hey Mad,

Unfortunately for me, the crohns has effected every part of my digestive and bowel tract. This covers everything from the neck to below the belly button. I guess this is why they are saying there is no one particular spot they can remove.

My sister also has it, but she had so much bowel removed and it bought her about 10 years of comfort. Now she is just starting to get sick again. Not good. I hope everything works out for you.:thumright:

 

[Retselth]

Hey PeninsulaLil,

Thanks. Regarding the instruction of hospital personnel, I don't doubt it! Lol. It's incredible, the look on some people's faces, when you try to explain what you have and how it effects you. I used to be a little reserved about it, now I just spell it out. Sometimes it's funny to see the reaction.

Unfortunately, it's not good on employers.

Me