Advice Please

[lc2978]

Im now 30 I've been with Crohns since I turned 17. My conditions started deteriorating after april 2008 ending up at the hospital for 8 days. Had lots of inflamation, fistulizing different loops in the intestine.

I got out of the hospital with very high meds, pred, 6mp, levaquin, flagyl. Had cat enterography done and results were not very good. Dr got me on Remicade right away since my crohns now is fistulizing. 4 moth passedt and..

Also have a perianal fistula which i hade dealt with for 13 years. Now after the 4th Remicade infussion I feel alot better, it closed up, but I one weekend I started urinating air and felt bladder gurgling. It is a horrible feeling so I went to doctor, ordered cat enterography and there was air in the bladder, Dr said intestine ileum is presurring my bladder and inflamation is consistent so opened up a hole in the bladder. I have been on flagyl and levaquin for 2 weeks now and it seem to have closed up, I still feel pressure and irritates when i urinate at times, but no more air for now..

I have an appoinment with Surgeon on Nov 11th, Im very concern since I am now in 100mg 6mp, flagyl 3 times a day and levaquin, + pentasa.

I also feel a sharp paint at times on lower right quadrant. I dont know if surgery will help me or Im just very concern since I just had a baby, my wife is depressed, and I have not talked to anyone about my current condition.

Has anyone had this type of surgery before, is it recommended and how fast u recuperate.

I appreciate all feedback

LC

 

[jed]

hey LC,

probably wasnt the same surgery, but i had my large intestine removed. recovery was remarkably easy (2 days were hell, apart from that it was some nice time off work), and with the methotrexate and small amount of pred i'm on, it was the best thing i ever had done for my crohns.

 

[Guest]

hi LC, i have also not had that type of symptom nor the kind of surgery you're facing, but i have had extensive bowel surgery more than once. i am sure it will help you - getting the issues sorted surgically in one go is far better than waiting and hoping for meds to do something & it sounds like you need surgical intervention. initially you will have the normal recovery period, and no doubt question why you put yourself through it when you hit the bad moments, but once those initial feelings have passed, you'll probably be really glad you did!

please don't bottle up your worries and feelings any more - if there is nowhere in your life you can unload these things, then come here - we're here for you.

 

[lc2978]

Thank you Guys!! today I feel better, I will let you guys know. Thank again..

 

[lc2978]

Another Fistula

Guys,

The first fistula to the bladder closed up with some chinese herbs. I have been ok for a while since now Im feeling bad again. Im used to deal with the pain, but the fistulas to the bladder are hell. Now it seems like I have another one going from right side of bladder, it feels different. It is a weird painful sensation since I could feel it developing. It feels like you have a wound in your right groin area, but it is all behind the pubic bone in the bladder.

The chinese medicines really helped me for 6 month. They keep all clean and avoids inflamation and infections, but it is not enough. Tomorrow I have a nother CT Enterography to see where the second filstula is located.

I have not been on Remicade since Dec 2008, no pentasa, just 75MG of 6MP.
I am eating once a day if I am lucky, if not then I will make myself a shake with organic rise milk and wholefood soy protein powder. It really helps keepos me going. I am now at 160lbs.

My worse fear is the surgery, I dont know how much they need to cut out, it feel pain everywhere, but I dont know the severity of the surgery. At this time I dont think I have an option. I have tried it all and fistulas are still developing, pain is very intense, and Im alwayus very tired.

I think I will be going for it soon, and just wait and see what happens after it.

Thank you all.

Leo

 

[kello82]

hey leo.
wow sorry to hear about that. ive had big problems with fistulas too, but never to the bladder.
how come youre not on the remicade anymore? a lot of patients with fistulizing crohns (myself included) have/had great success with the remi in taking care of the fistulas. i built up a tolerance to the drug though. did the same happen to you?

(i did not read the earlier posts, so sorry if you already answered that question up there)

 

[lc2978]

hi,

It started to wear off a bit and did not have a chance to get to next infusion. I got cat scan today so lets see what doctors recommend next. thank you

 

[kello82]

allright well good luck with the scan

let us know how it goes if you can, ok?

 

[Guest]

all the best for your scan today.. please keep us posted..

 

[Stleger88]

gl I hate getting the knife

 

[lc2978]

Finally surgery

:confused2: Guys after being on Humira for few month with sucess, the fistula strikes again to the bladder. I have been feeling very good and eating ok. However after a business trip to NC I came back sick again and that same night started to pass gas while urinating. I called my doctor and he suggested to go to ER. They did a cat scan (by the way it has been so far the best since I just had to drink lemonade ;-) I guess they had the contrast mixed up with lemon juice). Again air shows again in the bladder. It is painful to urinate most of the times and it is unpredictable when gas will come out which shakes up your body at any time since it is hell of a sensation. Well, my doc recommended to go see the surgeon which recommended small bowel resection and he will also patch up the bladder for the damages caused by terminal ileum.

I have some concerns with the surgery specially with stapling them together. I understand it is more secure but why not just place stiches and let it heal up. I wouldnt like to be pooping titanium staples or having one stuck to internal organs. Not too sure about that, but he insisted with the staples. Well I guest it is what it is and I need to get it done. Also since Monday on I have not been passing more gas and feel alot better. Im on flagil 500mg 3 times a day, cipro twice daily untill today and 6MP 75 mg. I will also put my shot this Sunday. The surgery will take place on Oct 9th, and it is my first surgery no other issues except crohns. I asked the surgeon a few other questions about the procedure and preventing future fistulas developing on the bladder. He mentioned that he will use some other mass and tissue from my body to place between the bladder and small intestines. Im not too sure how will get that done but would be nice to never have to pass gas again while urinating if you know what I mean.

I also asked him about how many connetions can be made since it is just one large pipe alike. Well he wasnt too happy answereing all these questions sicne he told me it only comes from his med school students. Oh well I need to know the procedure. One more concern was to wake up and see crazy scenario, like bag connected to hole in my belly or being cut open all way since he said he will do it laparoscopic but it depended on complications etc.

I can tell you that Im not scared at all but concern with my family specially my little daughter since she needs me now.

Well I know I dont put too many post, and only when I feel sick but I wish you all just good and make sure crohns lives with you and not you with it.

Leo

 

[lc2978]

Thank you Shantel, I need it going to get it out the way.

 

[lc2978]

surgery update

Well, I'll meet the anesthesiologist Friday 11am and will have surgery around noon. Im going to the hospital now since Im admitted for pre op tests.

Ill let u know how it goes. It is my first surgery so lets see. Thanks

Leo

 

[lc2978]

Surgery was sucessfull, Im now at home after 10 days at the Hospital. The surgery lasted 6 hours, he started laparoscopic and had to cut me up a little bit more since the bad intestine was too inflamed. My surgeon removed 1 foot and 2 inches of small bowel and he said that all the rest is disease free. I feel great and eating good right now. The insition still closing up every day I feet better and better and not taking pain medicine. It was really worth it, the first 3-5 days are very long and painful. They gave me dome liquids 2nd day and I started vomitting so they had to place the NG tube, it was the worst of the surgery since it is very unconfortable and I cannot tolarate it more than few hours. Well that was a nightware and it is over. I will also get my Humira shot today and continue with good diet hope to be in remission for a while. Thank you all for the support.

Leo

 

[imisspopcorn]

Best of luck to you Leo.