Newbie needs to vent (fistulotomy tomorrow morning- eep!)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

DellaStreet
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/1/2009 1:08 PM (GMT -7)   
I was diagnosed with Crohn's, after colonoscopy, in December 08. I've had minor stomach issues all my life, always attributed to lactose intolerance (which is funny because greasy foods are my main problem...). My huge flare began after a bout of food poisoning from bad bacon at IHOP in July 08. My mom and I both got sick, along with other patrons, but I kept getting sicker. Everything started to clear up, until September, when I was put on a heinous regimen of antibiotics by a doctor who said "your white cell count is high- probably a bladder infection, but who knows."
Honestly. "Who knows."
I lost 35 pounds between September and late November, when I finally got to my wit's end and called to ask if I'd been tested for hepatitis, after my stools turned orange. This put the office into overdrive, thinking I'd lied to them all along, and really had hep. (Right, you're the doctors telling me "who knows," and I'm a big dirty liar!) Then, magically, they find that a stool culture they'd done had an elevated white count, and sent me to a GI doctor.
I'm fairly certain that I'm doomed to the worst doctors in history. Other than a diagnosis, my GI doc has done little more than provide me with a regular dose of "this is a death sentence" rather than any hope. In January, I consulted her about a lump in my perianal region, and she really dismissed it as that- just a lump. A week later, I was in a walk in clinic because I could barely sit, let alone sit any longer than to drive myself to the clinic down the road. Now those two doctors are in a pissing match over why it was diagnosed as a cyst, rather than the beginning of a fistula.
Hi, patient here? Can I just get some help? After finally getting to a colorectal surgery consult this morning, they said I needed an emergency fistulotomy tomorrow morning.
Of course, Dr. Bearer-Of-Doom says this means that, aside from my 100% improvement in bowel function, my condition is "gravely worse" and I must begin taking Imuran, in addition to Asacol. But back up- I've had this since just a week after diagnosis, before the Asacol had even begun to help. So... wouldn't the logical deduction be that this was a weakness that's been there all along? That she missed?
UGH I AM SO FRUSTRATED!
On top of that, my boss seems to think that this is magically going to make me "all better." He's one of those types that is never sick, and has never dealt with chronic illness. I expected more from a Walgreens manager...

crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 4/1/2009 1:20 PM (GMT -7)   
Sorry to hear your difficulties, it certainly would help if you had a decent dr.  We never heard that kind of gloom and doom.  My daughter was diag. in the summer of 2006 and had no symptoms or problems until the summer of 2008.  She has a fistula and a perianal abscess.  She had a large lump on her butt that the pediatrician didn't think was anything to worry about and she ended up in a walk in clinic, who told her to go to her gi.  who referred her to a colo rectal surgeon and he operated that very same day.  cleaned out abcess and put a seton drain in to keep open and draining.  She did get relief at first, without any additional meds but they probably should have started her right away on something because she is still dealing with the abscess.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 4/1/2009 2:31 PM (GMT -7)   
Della,

Sounds like after surgery, it's time to look for a new GI if you can. Your doctor doesn't seem to care about your treatment, and I just couldn't deal with the "gloom and doom" myself. You need a GI who cheers you on and has a good plan based on what you're going through. Also, you need someone who will listen to your complaints or symptoms and take them seriously.

As for your boss, it's hard for someone who doesn't have or hasn't experienced (maybe secondhand, spouse or something) a chronic illness to understand what we go through. They just don't know about the disease, and if they act or say things that are inappropriate, it's just ignorance. Plain and simple, they're dumb to the disease.

I hope surgery goes well, and you're on the road to recovery soon.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/1/2009 4:06 PM (GMT -7)   
Hello Della!

I am sorry! Such horrible doctors!! Shame on them! I agree you need to get in with doctors who know Crohn's and have their wits about them.

I suggest you search through old posts for suggestions on how to care for yourself after abscess surgery. There are great suggetsions on supplies you may need, how to keep clean, and how to deal with wound care. You can search by using the "Search Site" bar at the top middle of this page. I hope it goes very well and you get relief!!

Let us know how it goes!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


DellaStreet
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/2/2009 12:14 PM (GMT -7)   
Thanks to everyone for the comments- they're much appreciated. The surgery was at 7 this morning, and I'm surprised that I feel so well! There's very little discomfort, even after the local wore off. I actually wish that this surgeon could be my GI doc, because he was the best doc I've experienced so far. He'd prepared me for the possibility of needing a seton, but it wasn't necessary. He gave some really encouraging words about my recovery to my mom, after the surgery, saying I should be good as new in no time. :) I know that might not be the case, but it's nice to hear something other than the gloom.
The fistula was small, and even as much as my GI doc sort of condemned my general doc for the "misdiagnosis", the Cipro she had me on had at least kept it from getting out of hand. I'm counting myself lucky that it hadn't reached muscle tissue. I'll be taking 500mg of Flagyl twice a day, for ten days.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/2/2009 4:19 PM (GMT -7)   
Hi Della!

What great news! I am so glad it went so well!! Now just relax and have patience. It will heal and you will be out and about soon. I was on flagyl and Levaquin (cipro's stronger sister) and they saved my life. No joke. But they do have some side effects. Plenty of old posts on them both. But flagyl really is great for killing those nasty germies from the rectum so stay on it if at all possible!

Take care!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


DellaStreet
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/3/2009 1:22 PM (GMT -7)   
Well, I ended up with peripheral neuropathy from the Flagyl, so doctor told me to discontinue use, and take 4-6 sitz baths per day, rather than the recommended two. He's not going to put me on any other antibiotics. Here's hoping I still heal up!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/3/2009 1:55 PM (GMT -7)   
Hi Della! That was fast. Have you taken flagyl before?? The good news is your nreves should regenerte with time. The feeling sure is weird though. My feet were tingly, numb, and ultra ultra sensitive all at the same time. You should be OK without more anitbiotics. Now that the abscess and fistula are gone, nothing should get trapped and fester. The body has an amazing ability to deal with the "stuff" down there as long as we do our part and keep it as clean as we can.

Gotta love those sitz baths. My docs say that nothing promotes healing better than putting you butt in a tub full of hot water. I wanted to do the toilet kind but they said that wasn't nearly as effective. My skin got so dry! Just what I needed on top of everything else! But then I changed my mind-set and decided sitz baths were actually spa indulgences. "Healing waters" followed by lots and lots of moisterizers. Before I got sick, I would have welcomed a luxurious bath in the middle of the day. I admit I wasn't totally successful at convincing myself, but it did take some of the drugery out of it.

Get well!!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 4/3/2009 7:35 PM (GMT -7)   
Glad everything is going well! I'm lucky and haven't had a fistula, but the idea of having one really scares me! I hope you find a better GI though - the last thing you want with a chronic illness is to have to deal with some doctor who brushes you off and doesn't care for the rest of your life! There are lots of good ones out there, so I hope you find one! It can be dangerous having a doctor who doesn't listen - could end up making your condition a lot worse than it needs to be! Hope the healing continues to go well :)

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 4/4/2009 2:02 AM (GMT -7)   
sorry for your predicament della, maybe you should get perry and paul in on it...:0)
randynoguts 



     http://www.geocities.com/randynogutsweb/


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/9/2009 12:12 PM (GMT -7)   
Sorry to hear about all your problems i had a sinet put in my fistula i had it 2 and a half years and finally they put me on remicade and they were able to remove the silk not didnt feel like silk,the only problem i had was every time my bowels moved it pulled on the knot and it was really uncomforable and tring to keep the area clean is a whole new bag of chips i used the pre moistened wet wipes there great it soothes it alot,dont fear the surgery its only minor but still surgery non the less all of its scary but they do put you to sleep for it down here anyway and the freezing stays a long time there will be a huge packing around your bum dont worry its not that big they just have to cover the area once that is removed they should let you go home if everything goes well and i am sure it will do lots of sit baths and get that round pillow to sat on it will help good luck keep us posted and always remember there is an angel for everyone and yours will be with you tommorrow and continue through with you untill your well again.I hope that helps you a little bite and again i am sorry you have to go through this its one of the dreaded things of crohns disease and in my eyes and A** there is no worse there painfull and sore and they just plain SUCK BAD.Your Bowel Buddy Jenn.
i love this site a friend found it for me.Another one would ccf crohnes and colitis foudataion

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 5:23 PM (GMT -7)
There are a total of 2,734,355 posts in 301,205 threads.
View Active Threads


Who's Online
This forum has 151325 registered members. Please welcome our newest member, artgal234.
368 Guest(s), 15 Registered Member(s) are currently online.  Details
Tnmproject, desert bound, Jasperilla, Wanda1225, Teamchris, Gear, Scaredy Cat, reminder, Redwing57, jdcd57, ChickNorris, time2reclaim, exqualls, artgal234, snowboat


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer