Anyone else dealing wwith Crohn's Disease?

[NY65912]

I've been a stranger to the forums all winter while having repeated flares ups of Crohn's Disease. Just got out of the hospital the other day and I'm wondering how others here deal with their Crohn's.

Looks like surgery in the future. I was diagnosed 12 years ago and have had flare ups only occasionally. But this time the ileum completely closed and was severely inflamed.

I got out of it (surgery) by having no food nor liquids by mouth for 10 days and being attached to 5 IV bags with strong antibiotics, a potassium IV pump and other goodies and countless probing.

My strength is sapped, no appetite, lossed 15 lbs in 12 days, weakness, joint and eye pain, nausea and fear of the knife. And let's not mention the constant trips to the WC.


The real problem here is that I don't think I'll have the strength to continue my track habit.

I'm ready to cash in all my chips........sell the track car and trailer. Hell, I just spent mega bucks to have a monster engine built and I'm not even excited about it.

I intended to document my 3.8 build here on the BBS but never had the drive to do it.

Sorry to rant. I just needed someone to talk to.

[Dueller]

Buddy of mine has had it for 20+ years. He's very active 45 y.o. Doesn't slow him down as far as I can see. If I'm not mistaken, he is on some new/experimental regimen/drugs and it is remarkable. As far as I know they've been able to avoid surgery. I'll ask him for the details.

[RoninLB]

so you figure it'll be around permanently?

[NY65912]

Dueller, thanks, I'm starting to research the new treatments. I know that Remicade is new, it is given in IV doses.

Hi Ron, yeah it's here to stay. Hopefully it will lay low in remission. I was doing good for many years. The tiredness and aches and pains were just part of life. This episode was bad.

I'll keep trudging along.

Thanks

[M.D. Holloway]

My neice has it - a great girl, very pretty, married a great guy (cop) and is going in next week to deliver her 2nd child. She suffered with this as well as Lyme disese - talk about bad luck. She has been on a colostomy bag for a few years now. She has to watch her diet and will go in for more surgury after this child.

I don't know if there are different levels of severity. Hers is pretty bad.

She is active and if you saw her your jaw would drop. She is 26 and convinced her hubby that she wanted to start a biz so she wrote up a biz plan and got a small loan and started a tanning salon which is doing very well. She chases around her 2 yr old and she is pregnant. She also exercises and for all appearences looks and acts like a 26 yr hottie. Not many people know just how sick she really is.

[M.D. Holloway]

so...any pics of the car?

(I know I'm a vulture...)

[Rot 911]

Mike, I'm a member of the club. Didn't even know I had it until I got a colonoscopy last June. Just figured I had a fuched up digestive system. Even last summer as I was taking Asacol I kept ignoring the symptoms. Then last fall I ended up with an abscess up against my stomach. Spent a week in the hospital, no food, IV's, same as you. Then another 30 days with a pik line in the inside of my upper arm for all my nutrients. All to avoid surgery. That ended beginning of December. Spent the next month just about like you are now. Felt and acted like an old man.

So far so good. I actually feel pretty normal. I take Asacol 4 times a day and Imuran once a day. Along with a B-12 shot once a month. I really am back to normal physically. Mentally I just keep worrying about another attack that might require surgery. I have been told it is inevitable and once you have surgery you will more than likely need another in the future. I'm 52 and hope the surgery is a long ways in the future. I am lucky to have had a surgeon and an internal specialist right here in Jefferson City that have kept up with the latest methods of treatment. The also do the remicade IV's here, but fortunately I do not require it at this time. I have my blood checked every month to make sure I am at the right dose for the imuran.

Feel free to talk to me about it any time. This is the first time I have ever had a potential quality of life limiting illness.

[Flatbutt1]

I had Ulcerative Colitis for years. It has abated to a constant IBS. But the damage to my spinal cord really gives me GI fits! No medication for dead nerves. Good luck with yours.

[biosurfer1]

My sister has it. Complained for years about stomach problems, but she is a bit of a hypochondriac (seriously) so it wasnt caught until she was 27. She had a surgery where they cut out a small section of scarred lower intestine. She watches her diet close but says she has gotten used to it now. Diet, with a pill or two a day and she says she feels normal 99% of the time.

She was told though that she will have to have the surgery again for sure, but not for 10-15 years, and since they know about it now, it will not get as bad before the next one. Just something she has to deal with but I suppose the good news is that most forms of the disease are controllable with a bit of effort.

Good luck

[johndglynn]

A nephew of one of my best buds has it, he has had it for over fifteen years that I know of. Normal guy: kids, work, does a lot of hillwalking and plays football (no not that thing they call football in the colonies). He seems OK on it, though needs to rest every once in a while over a weekend.

Keep your chin up Mike, could all come good in a few short months. Good luck buddy

[NY65912]

I'm almost 53. I've been very active my whole life. I never heard of Crohn's until 12 years ago. Looking back I and my wife can see so many times that symtoms were present and only thoght to be a virus or bad food.

I'm taking 16 Pentasa and 3 Flagyl a day right now. Symptoms are getting better slowly.

This episode was the first with a blockage (stricture) in the ileum. I'm told the same about surgery, once you get one you'll need another. That is why I fought like hell not to let them do it this time.

I guess what is really bothering me with all this is the fact that my strength and stamina are at an all time low. I'm really bothered by the fact I have restrictions placed on me.

Like you said Kurt, I'm always waiting for the other shoe to drop, always worrying if it's going to happen again.

I'm just pissed off that this damn thing has sucked my dry at least for now, and my zeal for driving my track car is gone. Hell, I haven't even taken out my M491 for a run yet since the spring! I'm terrified of being away and having a "problem".

Sorry to rant. Thanks for the ears.

[Tobra]

Originally Posted by RoninLB

so you figure it'll be around permanently?

that is the nature of the beast at this point

DO NOT sell your track car because of this. You are depleted and depressed, bad time to make a decision like that for one thing, and you will improve, physically and emotionally.

Flatbutt, if you are having pain, you may want to ask your guy about Lyrica, if it is numbness you are probably stuck with it.

[Rot 911]

Originally Posted by NY65912

Like you said Kurt, I'm always waiting for the other shoe to drop, always worrying if it's going to happen again.

I'm just pissed off that this damn thing has sucked my dry at least for now, and my zeal for driving my track car is gone. Hell, I haven't even taken out my M491 for a run yet since the spring! I'm terrified of being away and having a "problem".

Mike the worrying will decrease and your energy level will increase with time. Took me a couple of months before I quit panicing about every twinge of pain I had in my stomach. I am back to running on a regular basis and doing everything else I like to do.

Do you get your blood levels checked every month? That is how I found out I was low on B-12 and Iron. Getting the shots monthly and taking an iron pill daily did a lot for raising my energy levels.

[livi]

Sorry to hear about it, Mike.

I have treated a lot of kids over the years with IBD. I know what you are going threw.

[JayG]

I have it and was diagnosed about 7 years ago. The first 2 or 3 ears were awful but it got better. The last few years have been MUCH better with the flare ups lasting weeks not years. Good luck with it. When its bad there is nothing like it. You can't do anything without being by the bathroom. When its fine you dont think about it. Its a weird one.

[NY65912]

Kurt, thanks I'll ask the doc when I see him about the blood levels and the B12.

Tobra, thanks as well.....I probably won't sell the track toy but there are days when I just don't give a care about it. But I agree, like Mom used to say....."this too shall pass".

I thanks ALL of you for listening and for the good cheer. I try to explain to others just how therepudic the BBS is and what a truly great community we have here.

TJay, Bio ,Livi, Johndglynn, Flatbut ,Ron, Lube. Dueller....thanks for the input and good wishes, I really appreciate them. I think I'm starting to feel better already.

When I'm really ready to sell the track ho I'll be sure to let you all know!

[Dueller]

Mike...I'm sure your docs are very good. My friend I mentioned is being treated by Dr. Lawrence Wrubel in Memphis. Supposedly one of the best in the country. Just an FYI.

Good luck

[NY65912]

Well, I must say that over this past weekend I feel as though I 've turned the corner. My strength and stamina have greatly improved.

The nausea has left and I've dropped the Flagyl antibiotics. I'm doing 16 capsules of Pentasa a day and so far so good it has been uneventful.

Thanks to all.

[Dueller]

Pentassa was one of the meds my bud was taking...says it really helps and improves with time.

[JayG]

I was on asacol, flagyl and cipro for years. Once you feel like the inflammation is gone then you might have months and months of feeling normal. Hopefully the big flare up is over.