Need Advice

[fschriner3]

I was diagnosed with Crohn's last October after years of abdominal pain. That is really the only symptom I've ever had. My first Dr. put me on Pred & Asacol for the first month. The around Christmas we decided to start Imuran after the Pred was finished. I felt unusually tired while taking it and we have a 1 & 2 year old, so that's not a good combination. I called my Dr. and told him I wanted to stop taking it and he agreed. I really wasn't having any pain to speak of, so he said just keep taking the asacol for now. I then switched Dr.'s to one that is regarded as the best in the city if not the state. He deals only with Crohn's & colitis patients. He did a colonoscopy 2 weeks ago and for the first time they were able to take a biopsy and confirm ileitis consistent with Crohn's. The first Dr. diagnosed me with results from a pill camera because two previous colonoscopy's didn't show anything. He put me on endocort right after the colonoscopy and now wants me to try methotrexate. I'm very concerned about the alchohol restrictions on this drug as well as other side effects. Whether it's right or wrong alchohol is a very big part of our social life and something I truly enjoy. I expressed this to him and the nurse and they said a couple of drinks every other night or so would probably be fine. I could probably make some changes and try this, but I don't want to always be worried if I'm out with my friends and I have a 3rd or 4th drink. He said we could go straight to Humira instead and I told him I would have to think about it. I think part of my issue is I really don't have any symptoms outside of occasional mild pain right now, so it's hard for me to totally change my life when I'm not having any real issues. Would love to hear some other peoples advice.

 

[Trysha]

Hello and welcome to the forum,
It would seem you have a dilemma to resolve .
Crohn's does rob us of normal living especially when it is active.
When it is relatively mild or inactive it can give us a false sense of security---ie its gone away---I am in remission ---etc.
However it does rear its ugly head when we least expect it and events can be quite serious to say the least.
It is an unfortunate fact of crohn's life that we need to take drugs, some of which have toxic side effects, and others that subdue our normal ways of living.With crohn's patients
alcohol can have some deleterious effects when used alone, and when used with drugs.
Each individual will need to make their own balanced decision as well as following advice of doctors.
Although I might take a rare social drink for a birthday or other special occasion it is not a part of my life.
There will be others on the forum that might be more helpful to you in this regard.
Hugs and best wishes
Trysha

 

[fschriner3]

Thanks for the response. I think my eyes are really being opened up to the severity of this disease. The first doctor acted like my case wasn't that severe and we would find the right medication and things would be fine. After reading posts on here I get the feeling it is very rare for that to happen. Does the severity of ones particular case usually present itself from the start, or do most people just get progressively worse? Am I living in a dream world if I think I can make some changes in my lifestyle & diet, find the right medication, and go on to a long period(5-10 years) of remission? I'm not in remission right now but my sole symptom, abdominal pain, is very manageable. I guess I'm worried that I have yet to read a post from someone who has been able to achieve this even though the doctors seem to act like it can happen.

 

[Miss Underestimated]

NO it doesn't always seem serious, even though it is. I had very few symptoms for 25 years, then I almost died because my colon perforated. After the emergency surgery, I went back to almost no symptoms. My Dr. did some Prometheus tests that determined if Humira would work for me - you might want to ask about that. The tests are not conclusive for everyone, from what I've read, but they were for me.

 

[fschriner3]

I understand it is something I'm always going to have to be aware of and keep an eye on, but is it unheard of to not have severe complications? I know most of the people on this forum have moderate to severe cases, but are there not people who manage it for the majority of their lives and not have it impact their lifestyles too dramatically? I can handle some pain and if I have some D to go with it that is fine too. I just read about people who say they can't get out of bed and are in the hospital for long stays for numerous reasons. Does this happen to most everyone or am I reding about the most severe cases?

 

[Miss Underestimated]

The inflammation causes the intestinal wall the get thicker and thicker. Eventually, it gets so thick and inflamed that nothing can get through it. Then you hope you make it to surgery in time and come out alive. Been there.

Just don't avoid seeing the doctor, and having the tests to tell what the disease is doing.

 

[Manzyb]

Yes, you can have a mild case and not really suffer from major complications.
There are plenty of people who go into remission for a very long time. There are even the lucky few that don't have to take any medications and are doing great. However, you really do need to keep going to the doctor for check ups and get all the recommended tests done, you should probably follow the doctors advice on medications. If you don't agree with a medication or do not like the side effects or whatever, ask if there are other options.

I guess what i'm trying to get across is that Yes, chances are you will be able to live a mostly normal life, but you can't ignore the fact that you have this disease.

 

[fschriner3]

Thanks for your response. I had a good talk with my doc yesterday about my case and treatment. He said he would describe my disease as mild to moderate based on symptoms and colonoscopy results. He said because mine is located in the ileum the odds of having surgery are increased. Therefore, they are going to treat it aggressively to achieve remission to prevent or at the very least prolong my need for surgery, which he acted like was not even something to worry about in the near term. We discussed my medication and I told him I wanted to try the imuran one more time before methotrexate due to the concerns with consuming alcohol and he was fine with that. I have a bachelor party to go to in Vegas later this month, so I'm gonna start in May. I've heard taking the Imuran at night makes it easier to deal with the fatigue, which was the only side effect I had. I 'm not trying to be selfish about continuing to drink, but it is a big part of my life and helps me feel normal. I've already cut back a little this week and don't have a problem doing that. Alcohol has never bothered me, in fact even a little bit seems to help when I'm having a little pain. I have already decided to eliminate the late nights with double digit drinks, but every now and again I may want to meet the guys to watch a football game or play poker and have 6-7 beers over the course of several hours.

 

[jjk308]

Methotrexate can affect liver function, needs constant attention and testing because of that, and I wouldn't touch alcohol if I were you while on it. It can be very dangerous.

I got a nice case of skin cancer and pre-cancerous lesions from Imuran (azathioprine)

Now on Humira and doing OK, mostly.

I've found that anything but a small amount of alcohol, about 2/3 a can of beer or a small glass of wine, makes me sick. Your apparent dependence on alcohol is troubling.

 

[fschriner3]

I appreciate your comments. My doctor said if I got on methotrexate he didn't see a problem with me having a glass of wine or two a few times a week. Everyone responds differently to these drugs and their disease reacts differently to what they eat or drink. I feel like most people on here did not consume alcohol often before they had crohn's and/or don't tolerate it well now because of their crohn's. It is a big deal to me because everyone in my family and my wife's family drinks, pretty much all my guy friends and our couple friends drink, and most of the people I work with and clients I entertain drink as well. I have one person I would consider a friend who doesn't drink and quite honestly I rarely see him. I'm not saying I will lose all my friends if I quit or dramatically reduce my drinking, but it will definitely have an impact. I can already think of a golf trip that we go on every august and we normally go up for a football game or two. These are trips I will probably not be going on because they will definitely involve a lot of alcohol and I know that is not what I need to be doing. The bottom line is I really enjoy alcohol and it is basically a part of every family or social function in our lives. If it starts aggravating my disease or Doesn't mix with the medicines I'm on then obviously I'm going to do what's best for my health. I was hoping to hear from someone who is in a similar situation and how they have handled it.

 

[fschriner3]

I forgot to mention that my mother has UC that was not diagnosed until 2005. She is now 63 and had a resection last spring. She also drinks regularly because it is a big part of their social life and always has been. One other question I had about imuran is the warnings about sun exposure. I was going to start it again on May 1st, but we go to the beach for a week on May 5th. I will definitely wear plenty of sunscreen, but I'm thinking it may be best to wait and start as soon as we get back. Thoughts?

 

[jjk308]

Not sure, but I'd always avoided the sun, wore hats, used sunscreen and still got it, on my face and the tip of my ear, places most exposed to sun. Fortunately imuran doesn't seem to affect melanoma and the kind of cancer I got was painful to remove, but not deadly.
I've never been much of a drinker but its a pain to not be able to enjoy a beer at a ball game or a glass of wine or 2 at a dinner. The alcohol problem didn't develop for a few years, though. Another strange thing is that I also get lactose intolerant when I have a flare up, so this disease is a real nuisance.

BTW on methotrexate, my gastroenterologist apparently doesn't like it, possibly because of the possibility of liver damage or lymphoma. He's never even suggested it for me, preferring other treatments.

 

[fschriner3]

I guess what I've realized is this disease affects everyone differently and all I can do is listen to my body and my doctor. I'm not going to cut out everything I enjoy in my life unless I absolutely have to. While I hate the fact I have this disease I feel blessed that I didn't have it for the first 30 years and my lone symptom is mild to moderate abdominal pain currently. If things get worse in the future then I will do whatever is necessary to get it under control. The only time I feel a food has made it worse is when I eat a lot of fried food, so I try to avoid that as much as I can. Thanks for the info on methotrexate. I'm scared of the side effects, but I think my doctor will put me on it if I can't tolerate imuran. He said if we have to move on to humors it is better to combine it with imuran or methotrexate. He said it is safer and usually is more effective and provides longer remissions.

 

[fschriner3]

Meant humira in that second to last sentence. Stupid auto correct.