I'm new here, though not new to Crohns....need some advice

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Dirty Dirty
New Member


Date Joined May 2006
Total Posts : 6
   Posted 11/17/2007 10:30 PM (GMT -7)   
Hey everyone, I'm a 23 year old guy who has had the crap kicked out of him for a year and a few months now.  I've been dealing with the disease since I was younger, but it grew out of control last September, coming on with the sweating, chills, vommiting and diahrea, back pain, etc.  I had Remmicade infusions for about a year and just this last September had my first surgery to remove a troublesome infusion.  They told me that after the surgery I would be looking forward to years of relief.  Saddly after I recovered from the surgery pains I was left feeling the same, if not a little worse, from this horrid disease.  I'm getting to the point where I'm feeling completely and utterly beat down.  Every day is the same - I sleep all day because I have no energy, I get up to really bad back pain, I take my meds...  It goes on and on.  I'm getting ready to go back to work after the absence because of the surgery.  Truthfully I don't feel ready to go back.  But I've felt this way since the begining and don't feel like it's going to get any better now or in the next four weeks.  I can deal with the diarhea, god knows how.  I can deal with the sweating/chills.  I can deal with the nausea I have 24/7.  What I'm having the most difficulty with right now is the back pain/leg pain.  I take Tramadol (Ultram) and Fentanyl patches to try and curb the pain, but it's not helping me that much.  Does anyone have any advice?  Anything at all?  about any of this?  I just don't know what to do...and it's starting to take it's toll on my family life, friendships, and my girlfriend (who, by the way, has been soooo supportive through this all.)  Thanks in advance.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/17/2007 10:40 PM (GMT -7)   
I know how you feel, I had surgery in July, and started having problems again almost immediately. Not sure if it's the CD or other problems from the medications I've been on.  Unfortunatly, although we have hopes, surgery is no guarantee of remission.

Are you on any meds at all? Did your doctor put you on maintenance meds? Does your doctor know about all these symptoms? Has he done any tests to find out what's going on?

If not, it's time to go back to your doctor (or another doctor if he doesn't listen), maybe get some tests, and see what's going on. If it's the CD, you want to jump on treatment as soon as possible, hopefully prevent another surgery. If it's not the CD, you want to know. Either way, a trip to your GI is in order.


Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


Dirty Dirty
New Member


Date Joined May 2006
Total Posts : 6
   Posted 11/17/2007 11:57 PM (GMT -7)   
I see my doctor about once a week. He's doing everything he can and I have faith in his abilities. I am on so many meds it's not funny, as I'm sure you and everyone else can relate. I'm on Imuran and Pentasa, Entercort (Sp?) I have had many tests done since surgery. I'm hoping to avoid Remicade infusions because they took so much of my time away before. Now they're talking about things I have to inject myself...

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/18/2007 8:45 AM (GMT -7)   
Hello, your problems have a familiar ring to it. So all I can say is hang on in, maybe when you get some more time out
of surgery, things might improve. What part of your bowel required surgery? I was wondering if they took the ileo-cecal
valve? The reason I ask is that, if they remove that valve you will lean towards having diarrhea....
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/18/2007 9:17 AM (GMT -7)   
If you and your doctor are working on it, really, that's all you can do. Does your doctor know for a a fact that the disease has returned and where? All you can do is keep taking medications and hopefully find the one or the combination of some, that will do the trick. There is no magic bullet. The "things you have to inject yourself" is probably Humira, and a lot of people on this board are very happy with the results, and if it's not too expensive with your individual insurance, you may want to try it instead of the Remicade. Going back on the Remicade can cause an antibody reaction.

How about your diet? Are you on the low residue? It may help with the pain, not so sure about the D. Ask your doctor specifically for medications to combat the D, maybe even an over the counter like Imodium.

Other than that, I just wish you luck. I hope you can get this under control soon. If you read this forum, you'll see that you're not alone, and that's all we can offer you. Come post anytime, vent to us, ask questions, keep us informed.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


Driver37
Regular Member


Date Joined Jun 2007
Total Posts : 93
   Posted 11/18/2007 10:08 AM (GMT -7)   
Sorry to hear the surgery has not worked out so well for you. I had a resection, almost three weeks ago now, and my main problems are lethargy and loose stools/diarrhea. Other than that, I feel great. I think part of the reason I'm so tired is that I'm also tapering off of Prednisone. But I'm really disappointed that my stools are still so screwed up. They are worse than they were before the surgery. I'm going back to work this week and don't know how it is going to work out. I'll be eating as little as possible to minimize trips to the bathroom, but I'm most concerned about the lethargy as the schedule, with my kind of work, changes a lot. Sometimes I'm working the nightshift, and sometimes the day. That can wreak havoc even on most healthy people having to sleep in the day one day, and then switching to the night the next. All I can say is I can sympathize with you, at least to some degree.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/18/2007 3:05 PM (GMT -7)   
Hi I second the low residue diet mentioned and chew foods really well until like mush,make sure your B-12 is good and do you take a good vitamin. Are you loosing weight ? Ensure is great for added help .Some people here say that they get more D for awhile after surgery. Your right about Humira it is something that can be done at home like Rem. but made of human protien instead of mice. You sound like you have a great girl friend .I know that all this can effect our relationships at times but we need people in our lives too .Hopefully you and your Dr's plan will work out sometimes they wait to see how our meds work before changing them. Let us know how things go if you restart work. lol gail

Barbz
Veteran Member


Date Joined Jun 2005
Total Posts : 848
   Posted 11/18/2007 7:44 PM (GMT -7)   
I had surgery back in April of this year and they removed 12 inches of the TI so now i have the D all the time unless i take my quastran and i always forget that. I do have to take B12 injections because the part that they removed is that of which the b12 is absorbed. Good luck i hope you feel better soon. If you are not happy then i would find a new doctor. God Bless. Barb

Dirty Dirty
New Member


Date Joined May 2006
Total Posts : 6
   Posted 11/18/2007 9:19 PM (GMT -7)   
Hrmm...I hate the Low Residue diet. I'm a meat and potatoes kinda guy. I'm slowly changing my habbits, though. If there is a chance that it will give me a little relief then I guess I should go for it. I just read my original post again and I failed to mention many things. I had a nasty fistula doing what they do best. It was causing a lot of discomfort. I had 4 inches of infected bowel removed near my Terminal Illieum during the surgery. Before the surgery I had a lot of pain in my lower right quadrant of my abdomen, kind of right above my pelvic bone. I still have that pain even after surgery. And the D. Besides changing my diet, taking meds, and all those lovely things, does anyone have any advice for the back pain? I go back to work tomorrow for sure now :/ I don't know if I'm totally ready, but I gotta get back up sooner or later. I still sleep all the time, so tired and drained. That's going to be the biggest adjustment. I think I have another absece forming near my rectum. I had to have one removed in April...with NO anestesia (sp). WOW. That sucked majorly. The reason was that it was so bad and needed to be done ASAP. There was no time to get me into the hospital before hand. I went about two weeks before going to the doctor. I had never experienced one before. Now that I know what to look for... I'm at least starting a new job. My old employeer, a health care company, showed me little compassion in all this so I decided to say goodbye and get a job that would be more flexible. A bookstore! I love bookstores, so the stress from my old job won't be as bad.

So yeah, the back pain? Any advice for that? What do you guys do to combat that?

Driver37
Regular Member


Date Joined Jun 2007
Total Posts : 93
   Posted 11/18/2007 9:21 PM (GMT -7)   
I was going to start a new thread asking how long people usually have D following a resection but it seems to be on a case-by-case basis and depends on what part was removed. I had what's called a lap-right hemicolectomy. I think they said that half of my colon, on the right side, was removed. It was about 15 inches and I don't know if that included the terminal ileum. I had my post-op consult with the surgeon a few days ago and he seemed a little surprised that I was still having D so bad. He said I'd have to talk to my GI about it who I see tomorrow.

Sorry I can't provide much in the way of advice for back pain Dirty. I had it kinda bad when I got out of the hospital, from being in bed all the time, but it's better now. You might consider going to a chiropractor. I'm not a big fan of chiropractors, but they do seem to help some people.

Post Edited (Driver37) : 11/18/2007 9:24:31 PM (GMT-7)


Dirty Dirty
New Member


Date Joined May 2006
Total Posts : 6
   Posted 11/18/2007 9:56 PM (GMT -7)   
I had an MRI a few weeks ago so that all my doctors could try pinpointing the issue. Beforehand the surgeon said it was unrelated to the chrons and surgery. My GI specialist said it could be due to the Chrons. My regular doctor sent me for the MRI to check and found nothing. So now my GI and regular doctors both point to the Chrons as the problem. I'm on Fentanyl 25 mgs and Tramadol 4 times a day at 50 mg. I take Advil P.M. to help me get through the night. That's a lot of medication on top of all the steroids I have to take daily. Like I said, I'm trying to change my diet to help things along, but so far I am not feeling any relief.

The surgeon said that I had D after the surgery because of the inflamation after poking around in that area. That was something like September 14th and I'm still having it. It's not everyday now, more like everyother day, but I have this intense pain along with it. Along with the D, there is this weird mucos like stuff mixed in that I only see when I have the pain. The doctors have no answer other than to keep up with the meds to try to get inflammation down. I swear, I haven't had relief in so long I don't even remember what it's like to feel like my old self. I don't go out to the bars - in fact, just thinking about having any alcohol makes me gag. I feel like I'm young still, but I've had to grow up so fast or something to deal with this. It's hard to explain really... But I sure do feel cheated somewhat. Here I am, 23 yrs old and I have this giant cloud over my head following me everywhere. I saw somewhere else on the forums where someone said that he/she was the one to always know where the bathroom is at a public event. I feel the same way. I don't go anywhere much because I'm afraid of something coming on in an instant. Not just D either. When this all started I was vomiting 3 times a day and pretty much lived in the bathroom due to a restriction in my TI. I don't know how long ago your surgery was, but mine was two months ago and I still have D pretty bad. I don't know if it gets better till we actually see remission. Ah, what I wouldn't give for that. Humira seems to be the next course in my treatment, as the med regiment I'm on now is doing little to ease my Chrons. I hear a lot of people praising it, so I'm hoping I'll get something from it. Cheers!

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 11/18/2007 10:19 PM (GMT -7)   
Ahhh you sound like me but I am sure many more of us. It is hard. The end made me smile when you said your girlfriend has been there for you through it all. That is a HUGE part of this darn and painful illness. I am 27 and my boyfriend (of 5 years) has been truly amazing with my family. To me that is my only medicine I can count on! Some suggestions which is actually something I am going to do is: a Pain Clinic! Pain Management for the horrible pains that come along with this horrible disease. Try it! What do you have to lose? That is the ONLY thing I have not done. I have not gone to a Pain Clinic but am looking in to it right now so that I don't go crazy. So are you on Remicade now? I was on Remicade 3 years ago but unfortunately had a horrible reaction to it (NOT common @ all) but after a few months of it it helped a little bit. I am on HUMIRA now. Have you talked to your Dr. about that Drug? This illness is so hard to live with and even harder for others to understand.

Do you go to any support groups? You would be surprised @ how great they are if you go to a good one.

Keep Your head Up though............ TRUST ME I know it is hard. I feel the exact same as you. And do not go to back to work to soon. We know money is important but who cares about money without your health.

This is a FABULOUS site by the way.

Keep in touch on here, Brittany

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 11/18/2007 10:24 PM (GMT -7)   
Oh a couple more things. I read your other postings:

BACK PAIN: Weekly massages. Do you have insurance? This will give your whole body a break during too. Physical Therapy an option too. As we know what works for one may or may not work for the other.

HUMIRA: I am on it and have been with 6 months. In general before getting my blood clot in Lung etc. Took away 70% of my Crohn's (pain, d, nausea, EVERYTHING) after about 4 injections. I highly recommend it. The company actually pays 100% of mine so that is amazing. I worked hard for it, but I got it. My boyfriend gives me shots.

WATCH WHAT YOU EAT?!!!!

Probiotics? Are you on any?
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