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I'm new and scared. Long story

Hey all, I'm a 42 year old 6 ft. 3 guy. 12 years ago, I had a Crohns scare, I had gotten in the hospital, they thought it was from my appendix but that had already been removed, so they thought it was Crohns. I was taking Vioxx at the time for back problems, I had a herniated disk, and well after the Colonoscopy they said quit taking the Vioxx. 2 days later all my symptoms went away. :)

Years go by I still have back problems till they finally get back enough where I decide to get a back fusion done on my back, thru my stomach, it’s called the ALIF surgery, very common if you look it up. I wanted the surgery done thru my back, but the doctor all his nurses all told me you will heal faster etc... Also my mother works for my doctor, hes a very good doctor. So I trusted him.


Well surgery went well, I was healing up and then I was at work and did something really stupid, we had a fire drill and I participated in it, the stupid part, were in a big building. After that I had tingling in my legs and I for the last couple of months had off and on Diarrhea and constipation and cramping, Also they had me on Celebrex, even though I told them that I had all those problems with Vioxx.


Months go by then I had one day an intestinal Obstruction, I started throwing up could not stop, went to the hospital, they got me under control, and I met a hard CORE STUPID nurse, They had me on Morphine and a drug what controls your nausea, well they needed to do a Cat Scan, So I had to drink a half gallon of this crap and hold it down, well I was able to and got back to the room and I figured, hey I’m done, this is nauseating me, I’m going to throw this crap back up. Well I throw up. The STUPID nurse thought, well he’s starting up again, and they ambushed me and put a NG tube in my nose, well as soon as they left, I pulled that crap out; from that point onward it was me against the hospital whether or not it was going back in. And I thought they were idiots, because THEY CAUSED IT. Anybody met nurses like this?


Well they found an obstruction, I stayed there a couple of days and kept moving around and it passed, more time goes by and I get more pains in my right side, and I had probably the most clueless Gastroenterologist I have ever met, this bozo makes me wait 9 days to do a sonogram. Well I had Gallstones. They did a colonoscopy to look for Crohns but according to this gastro doctor, I didn’t have it. Even though I had a mass in my large intestine. So I had my Gallbladder removed. :( I didn't realize about the mass on the colonoscopy till later.

Well they had me on Questran, Whelcol for the diarhea it never stopped, and thru my pain doctor for my back, Percocet and muscle relaxers and I just felt like I was getting worse. I had a MRI for my abdomen and the dumb doctor said I was clear again. This doctor I felt was learning on me, I knew he was fresh out of school a couple of years. This went on for 4-5 months :(

I had a friend who had gastro problems and she has a husband who has diverticulitis, I figured it was time to get a 2nd opinion. So I went to see their doctor he’s a colon-rectal surgeon. We’ll he comes in and sees my colonoscopy and MRI and right off the bat, says you have 2 fistulas, one at my ileum and the other at my large intestine. He said in layman’s terms, that my intestines have re-routed my small intestine in to my large intestine. Missing half of it. He said there are no drugs that will help this except surgery. He’s a very well respected surgeon in Atlanta where I live. I have read all his reviews. He said the drugs the other gastro doctor are making you take will just cause obstructions, and the previous Gastro doctor wanted me to get ANOTHER colonoscopy done. I asked the new doctor about this and he was like WHY? I have all the data in front of me. I showed him everything and he saw the scar from my back surgery and said, well it looks like Crohns but they may have messed you up doing the back surgery, I won’t know till I go in and fix it.

So that’s where I’m at the surgery is scheduled for 3 weeks from now, he’s taking the one from the ileum out and taking the other fistula out in my large intestine, he said they were both small and I should be fine after that. I have had this tingling thru my legs ever since this has started and gets worse every time I eat and the back doctor thinks, that since the inflammation is right by the ileum its right where the sciatic nerve is and I‘m praying it fixes it.

I’m like scared of everything and probably the most, the NG tube. I hated that thing more than anything they have ever done to me. I’m mad at the first Gastroenterologist for delaying the findings for this all, I think either 2 things, was he greedy trying to get another colonoscopy OR was he just that stupid. Also now knowing I may have not had my Gallbladder removed if I had a better Gastro doctor. I wish I had gotten a 2nd opinion.

Either way I’m not a happy camper, as you can tell by my rambling on. I have been dealing with this a year now and I have been on pain meds the whole time. All I wanted to do was get my back fixed and it has seemed like I opened a can of worms that I cannot get out of. :depressed:

I have been very depressed thru all this and my work has been very supportive of it all, but I’m praying that he can get me back on track, I still have diarrhea all the time, bout have to take Pepto bismal or Imodium daily. In my family’s whole heredity has never been Crohns, one case of Ulcerative Colitis but nothing else.

Why at times I think it’s the back surgery that caused this. Saw ya’lls site and you are all sound like we have the same problems and if it is Crohns; I’m already used to thinking about it. If anybody else has gone thru the stuff I have I would love to talk to them and get some hope. :) Especially gone thru a double resection in both the small and large instestine. I at times think the meds, Celebrex caused some of this, like the problems I had 15 years ago. The whole time I told the doctors about it and they won't listen, its a great drug. What they say, I cannot take a advil even because it has caused cramping.

Thanks

Kellix aka Eric
 
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Hey Eric
Sorry you have been through all of this.
I can relate to the ambush of the NG tube on a few occasions. Im not sure why they do i that way. I can sometimes sill hear the opening of the packages...lol.... I think it is a natural reflex to rip it right back out as soon as they insert it... it is a terrible feeling so I can definitely relate...and it really hurts when you rip them out yourself...lol I suppose they have had too many people either run or fight them when it comes to putting the tubes down... blahhh .. I have to have an NG tube in a few weeks so I thought I would share my experience.
My very first experience with them was when I was little. I ate a few mushrooms off the front lawn with a friend when I was little.. turned out to be poisonous... Im not too fond of mushrooms anymore :D (I lived in the country as a child and I use to see people pick these massive mushrooms from the fields..so I thought it would be okay..they were a little smaller but mushrooms all the same...)

Anyhow... sorry about all of your health concerns... you have had a really rough time. All I know is do not take any NSAIDS... I keep hearing this over and over again..

Take care. Sorry I couldnt offer you any help but I wanted to let you know that it will get better. Sounds like you have found a better doctor and hopefully you will be on your way to better care.

Please keep us posted and welcome to the forum :) There are a lot of really great people on here.. You're not alone anymore!

Wendy
 

Astra

Moderator
Hiya Eric
and welcome

Wow, you've been thro the wringer alright!
But now, have hope that the new bloke is gonna fix you and help you on the road to recovery.
Know that we're all here for you and to support you on this difficult journey.
And, no more NSAIDS!
lotsa luv
Joan xxx
 

xJillx

Your Story Forum Monitor
Hi Eric and welcome! I am so sorry your first doc didn't do his job. However, it's good you found your current doc, who sounds like he knows what he is doing. Did he make an official diagnosis of Crohn's?

I hope your surgery goes smoothly and has you feeling as good as new! Please let us know how it goes.
 
Not sure

Hi Eric and welcome! I am so sorry your first doc didn't do his job. However, it's good you found your current doc, who sounds like he knows what he is doing. Did he make an official diagnosis of Crohn's?

I hope your surgery goes smoothly and has you feeling as good as new! Please let us know how it goes.
Thank ya'll for the support :) He thinks I have Crohns, the other doctor did too but did not want to start me on any of the medicine at all.( I guess it was better I stayed in pain all the months :frown: ) I'm fine with it if thats the case. For 2 months 12 years ago I thought I had Crohns then they thought it was the medicine, but it may have been Crohns. The doctor that did the colonoscopy, the one I don't like, got samples polyps and all and everything came back inconclusive. So I feel like I'm half way in and halfway out whether I can call it Crohns. But my new doctor has been doing work for over 20 years and he said it was but said he would have to see when he operated. So we'll see, :(

Trust me I won't take Nsaids again. :thumright:

Thanks

Eric
 

ameslouise

Moderator
Hi Eric and welcome!

It's great you followed your instincts and got that second opinion. It's amazing how things can differ from one doc to the next! Sounds like the new guy has you right on track. Good luck with the surgery for the fistulae. Will the surgeon hook you up with a regular GI then to manage your care after surgery? Sometimes it takes a while to get the right mix of meds to get you feeling better. I hope you start to find some relief very soon.

- Amy
 
Thanks

Hi Eric and welcome!

It's great you followed your instincts and got that second opinion. It's amazing how things can differ from one doc to the next! Sounds like the new guy has you right on track. Good luck with the surgery for the fistulae. Will the surgeon hook you up with a regular GI then to manage your care after surgery? Sometimes it takes a while to get the right mix of meds to get you feeling better. I hope you start to find some relief very soon.

- Amy
Thanks Amy and all. I 'm glad I did go to this other doctor. I've only read one bad review on this new doctor, where this patient was supposed to be getting it done Laproscopically and then he changed it to a open surgery and the guy said it was because he was in a hurry. But other reviews are like, "He saved my life type" reviews. I knew I trusted him a lot more then the other just because he made a decision and showed me why? and the other doctor was so wishy washy, could not make up his mind. Like someone not sure of himself. Right when I had the first feeling I should have run out of his office then and there. lol

As far as a regular GI, I think he does it also what I heard that he does aftercare and does colonoscopys too. Hes a specialist so I know it will be more, but I figure I will stay with him till its better.

You know the old joke, I felt better before I went to the doctor, thats the way I feelt at times. Thanks all :)
 
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Dear Kellix,

Do shoot me, but I am a doctor. However, I am not a dreaded gastroenterologist. My spouse has Crohn's and has pretty much gone through the similar hell of multiple GI follow-thrus, CT scans, endoscopies, colonoscopies, and pill endoscopies. I am not sure what it is about the GI field itself..but if you don't fit their classic description of UC or Crohn's..it is a nightmare. Finally when they did exploratory surgery, the general surgeon said "Oh classic crohn's" and sewed her back up. So we are now in the process of seeking a second opinion. Her regimen is steroids, 6-MP, Humira, asacol, laxatives, a ginger preparation, aloe juice, and probiotics. Moral of the story is...if you don't trust your doctor...find one you do trust.

Dr. S
 
I totally agree

Dear Kellix,

Do shoot me, but I am a doctor. However, I am not a dreaded gastroenterologist. My spouse has Crohn's and has pretty much gone through the similar hell of multiple GI follow-thrus, CT scans, endoscopies, colonoscopies, and pill endoscopies. I am not sure what it is about the GI field itself..but if you don't fit their classic description of UC or Crohn's..it is a nightmare. Finally when they did exploratory surgery, the general surgeon said "Oh classic crohn's" and sewed her back up. So we are now in the process of seeking a second opinion. Her regimen is steroids, 6-MP, Humira, asacol, laxatives, a ginger preparation, aloe juice, and probiotics. Moral of the story is...if you don't trust your doctor...find one you do trust.

Dr. S
Dr. S

I'm really not mad at doctors, My brother is a doctor, hes a Anesthesiaologist and my sister is a nurse Anesthitist. (sorry if I spelled wrong). alot of my friends thought I was weird because I didn't go into the medical field. I'm a server admin, but my father reminded me medicine is a "practice" which means they sure aren't perfect. lol I wish they were, because starting with my back doctor, hes one of the best back surgeons in atlanta and I trusted him, liked him, etc.... But if it comes back that he caused it, which it might. What can i do?? For a couple of months the pain doctor my back doctor could not figure out at all what was going on, because they were like you should be better, like I was trying to get drugs, but I was still in pain, the instestinal blockage shined the light on it that it might not be my back, but the tingling down my legs baffled them.

Then the doctors in between the ones that I have dealt with who were reccomended thru the hospital when I had the intestinal blockage. Where it started getting bungled.

But that one gastro doctor, seemed for real like he was practicing on me, like he was out of school for 2-3 years but really didn't know what the heck he was doing. Also on the side part, every time I saw him, his whole demeanor seemed like my grandfather was a doctor, and my father was a doctor, so it was forced on me to be a doctor. Like it wasn't the field he wanted to be in. I know I'm assuming but this guy was king of clueless.

Why I totally agree with you, and I think God was looking out for me when I talked to a friend that her and her husband had gastro problems and she was a nurse for 17 years and told me about my doctor now.

One thing I know now, I will not trust a doctor thats looks like hes straight out of school. Why I love the internet because you can look at their accomplishments and how long they have been practicing their trade. I know doctors have to start somewhere, JUST NOT ON ME. lol :ylol:

I totally agree and hope your wife has a good one now too.

Thanks

Kellix aka Eric
 
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ameslouise

Moderator
The toughest part of IBD, IMO, is that symptoms and presentation differ from patient to patient. I think there are "classic cases" of CD and UC, but there are so many variations. If someone doesn't have weight loss or diahrea, for example, some doctors think they can't have Crohn's wihtout these classic symptoms. But we here at CF know different!

I liked my "old" experienced doctors I had during my serious bout with UC and my first 3 surgeries. They were experienced enough to know that nothing is certain with IBD.

My new and very young docs seem very sure of themselves and IMO haven't been around long enough to know that nothing is certain with IBD!

But I trust the young guys and they have done right by me so far....
 
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