Crohn's Disease Forum » Your Story » Hello. Short Version for starters.

08-04-2012, 06:30 PM   #1
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Join Date: Aug 2012
Hello. Short Version for starters.

Hi all. This post turned out to be longer than I planned. I hope some of the vets will give this a look.

The basics:

Misdiagnosed w UC x decades.
Crohn's diagnosis made 3 yrs ago.
Horrific surgical history.
No gut. Not short gut, no gut.
On Humira almost 3 yrs.
The Humira 40mg x 14 days is going to be increased.

I'm staring at the Imuran bottle I'm supposed to begin. I have questions for those of you with Imuran experience & will find a Imuran thread next.

Last surg was over 20 yrs ago. I have been told repeatedly to GUARD STOMA bc there is not enough intestine to create new one. What have I said to drs/techs all these years? "Please please be careful. Remember, there is a kink just inside the stoma which makes entry difficult. There's not enough to make a new stoma, please be careful."

Five days ago the GI performed an ileoscope. Inside the stoma and into the 9" or so of remaining intestine he found new ulcers. One is 12mm.

That's bad enough. Here's the part I'm insane with worry over. The day after the scope I changed the bag/appliance. The stoma was 2/3's BLACK. BLACK.

Immediate call to GI, he says it's necrotising, get to ER. (Will save for another time how appalling it is that these many years later the ostomate is the only one who knows ANYTHING about the appliance, never mind the stoma.)

The Emergency Dept. drs were at a loss and got the GI to the ER. The conclusion: He "thinks" it's "like a hematoma." He had to force the tube and the camera inside and in doing so, caused the trauma. "Why did you force it? Did you forget/not believe me about the narrow and kinked passage?"

(FYI: He's been in there twice. And other GI's in that dept have been doing my scopes for 14 years, without complication.)

"Did you use a pediatric tube? Is my stoma dying - is it just going to fall off? WHAT is going to happen?" Again, he "thinks" it will "take time to heal but that eventually it will be alright." I've heard that a million times but that's for another day.

I am allergic to and/or have adverse reactions to multiple medications which includes, and this is important to me right now, pain medications. There is nothing I can take but about a 1/4 piece of vicodin. It's the acetaphetemine (sp) that makes me ill.

My worst fear at this moment is doing the change tomorrow and having to see it again. Will it be in worse condition? What else is happening there now? Are there more surprises? I'll find the appropriate thread to look for feedback about stoma conditions and others who may have had experience with this.

I knew I was in a serious flare because I have never been in remission. But with this acceleration, the "don't move don't eat" treatment I've used over the years was not working.

I am horrified. Petrified. In a rage over the fact that there is no real improvement in treatment of these diseases even with the technology and that in fact, not all, but the majority of drs are still clueless. It's all about research and academics and making a name.

The facility I'm seen at IS the "best." I have been everywhere. I have been over the country. I have "found" the surgeons who "fix botched surgeries and aren't afraid of a challenge." Because of ALL of them, I ended up here. Again, at the alleged "top facility." There is NO such thing.

As patients we are lucky when and if we find the excellent physicans and surgeons and nurses, techs, who are as kind as they are skilled and brilliant. Who work WITH patients; who know that patients know their bodies, who listen.

Sadly, they are quite rare. Patients, ostomates, are still being ignored, mishandled, mistreated. If a patient "gets better" and doesn't ever bother the dr, the dr is happy.

If there is the slightest problem, if the spiked temp/the new pain/the increased pain/the patients' complaint of continuing problem which turns into a full blown infection, abscess, rupture, gangrene, peritonitis, whathaveyou - it is still the patient's fault! You weren't a "good patient" - if it doesn't compute in a drs textbook-mind, it doesn't exist and the patient suffers along from med/surg crisis to med/surg crisis.

If you're still reading, thank you. As you can tell, I'm beyond angry and fed-up. Will search the forums now that you guys have available.


(I'm sure there's a spellcheck somewhere, I'll find it.)
08-04-2012, 08:31 PM   #2
Jennifer's Avatar
Hi ks2012 and welcome to the forum!

You've been through and are still going through so much and I'm really very sorry. Unfortunately there are so many bad and careless doctors out there its ridiculous. I hope this forum will be able to help you both mentally and physically. May I ask where you're from?
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
08-04-2012, 09:04 PM   #3
Senior Member
Thermo's Avatar
Join Date: Jul 2012
Location: NorCal, California
Sorry you have to deal with so much, letting it all out and talking does help. How many feet of intestines do you have? The stoma support on this website is the best i have seen anywhere, there are some great people who are going through the same thing. This website has helped me get through some rough times hang in there.
Diagnosed-1992 (Age 8) Regional Enteritis 555.0

Meds - Humira, B-12 Injections, Vitamin D, Iron, VSL#3

Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.
08-04-2012, 09:21 PM   #4
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Join Date: Feb 2006
Location: Naples, Florida
Hi Kate and welcome! I'm so sorry to hear of everything you've been through I would be scared in your position as well.


Has anyone ever brought up the idea of a bowel transplant to you?
It's good to be back
08-04-2012, 10:17 PM   #5
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Join Date: Jun 2012
Location: Houston, Texas

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Hi Kate,

Welcome to the forum! You have come to a wonderful place for support and assistance. I too am very sorry to hear that you are going through such a tough time.

It would be very helpful if you could let us know how much bowel you have had removed. It would make a difference in the best advice we could offer you. I presume that if you are not on TPN, you have sufficient small bowel to absorb and sustain nutrition? Please let us know.

Is it possible for you to have someone with you tomorrow when you change your appliance? You are understandably feeling very anxious and I think it would be much more comforting if you could have someone assist you.

When you do change your appliance in the morning, if it looks worse, I think the best thing you can do, is go in and ask them to put you on TPN to give you bowel rest. This would give your bowel time to heal, and then you can concentrate on getting a better medical treatment that will address the flare. There are several new therapies that would be worth investigating.

Where abouts do you live?
08-04-2012, 10:22 PM   #6
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I'm new to alot of this. Diagnosed last Aug.2011. What is a stoma? Teresa
08-04-2012, 10:35 PM   #7
Jennifer's Avatar
723crossroads - Its a surgical opening for say a colostomy or ileostomy etc.
08-05-2012, 03:48 PM   #8
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Join Date: Aug 2012
Hi Crabby, thank you so much for the welcome. I'm in California. I appreciate your kind words and yes, I'm glad to have found this forum.
08-05-2012, 03:56 PM   #9
Jennifer's Avatar
Best GI I ever had was Dr. Ricardo Castillo at Lucile Packard Children's Hospital in Stanford. Unfortunately that is pediatrics but he may know someone who could take you on or I wonder if he'd be willing to take you on himself.

Edit: He does have a separate office in Monterey.
08-05-2012, 04:02 PM   #10
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Join Date: Aug 2012
Hi Tenacity, thank you for the kind words. I'm in SoCal. I've had central lines and hyperal in the past, post-op. The amount of bowel remaining: Through gangrene, peritonitis, abscesses and other post-op complications there is about 9 or so inches of bowel. The colon is gone and 90%+ of small intestine is gone. Not enough to make a new stoma.

The change today revealed a stoma that is half its normal size. I'm pertrified. If it's prolapsed I don't know what can be done. I do not want permanent feeding tube in stomach or via tpn line.

Resting the gut is the only thing to do when a flare is so bad, you're so right. I believe this is the worst flare I've ever experienced. And being on Humira I worry about how healing (please please let it heal) will be impacted.

then you can concentrate on getting a better medical treatment that will address the flare. There are several new therapies that would be worth investigating.
Thank you for those encouraging thoughts, T. Those are helping me.
08-05-2012, 04:22 PM   #11
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Join Date: Aug 2012
Hi David, thank you for the support. I appreciate it. I don't *think* I'm a candidate for a bowel transplant, but honestly, I don't think I'd trust anyone to ever attempt it but it's something to be aware of anyway; after my experiences with multiple surgeries and their complications.

Since there is no large and no small intestine and no rectum I don't know how that might work. Because there is no gut left (approx 9") that is not enough to create a new stoma and the double-digit surgeries created such a wall of adhesions that even a CT scan, nuclear studies, mri, us, has not detect even a 12cm-size abscess in the past.

I hope bowel transplants are a good option for people. Anything that can help. That's good to know about.
08-05-2012, 04:26 PM   #12
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Join Date: Aug 2012
Thank you, Thermo! To be able to talk about all this with others who "know" is a big help. I appreciate this forum, and so glad I found you guys. Thanks.
08-05-2012, 04:37 PM   #13
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Join Date: Oct 2011
Location: London, United Kingdom
i don't really know what to say, other than i hope it all gets better for you :P its hard sometimes, especially when it seems everything is going against you, but it can't always get worse, it can only get better from now on

Theres always a low point, but its how you react to that low point which decides how bad it is, and how you'll move on.

I hope you start to feel better best wishes!
08-05-2012, 04:44 PM   #14
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Do you guys think he should at least talk to the gastro dept. at the university of Chicago for at least a consultation? It may require a obvious visit, but that university looks at things slower, And when they tend to make a recommendation it's always the correct one and they make dam sure you the patient understand why, and questions answered. That's why they have the reputation with crohns that they do, along with them being on the cutting edge in research.

Last edited by Scaryman; 08-05-2012 at 04:45 PM. Reason: Spelling
08-06-2012, 08:45 PM   #15
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