My Journey (New Here)...

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angelcockatoo
New Member


Date Joined Nov 2007
Total Posts : 8
   Posted 11/12/2007 8:59 AM (GMT -7)   

Hello to all,

This is my first time posting in this forum. I found it last night and read some of the posts and decided to introduce myself. Please bear with me. This may be long. To this day, I am not sure if I have Crohn's.

This is my story:

Eight years ago, I went away to summer camp. While there, I decided I didn't like the food and ate primarily bread and water. Yeah, I was a stupid kid. LOL. After a couple of weeks, I started to notice my stomach hurt and I hadn't gone #2 in a couple of weeks. After another week or so, this got worse...I started to feel nauseous, crampy, etc. I finally went to the camp nurse who gave me milk of magnesia. It didn't work. We tried prune juice. Again, nothing. She then gave me a fleet enema. Nothing. The next day another fleet enema. Again, nothing. At that point, they sent me to a doctor, who gave me more laxatives and a suppository. Nothing. I went to the hospital up there and they basically did the same thing. Camp was over a week later and they sent me home. By that point, I was in severe, gut-wrenching pain. I couldn't even bend over to tie my own shoes. My parents took me to the ER the next morning. After some tests, it was determined that *surprise* I was constipated. DUH. The GI at the hospital gave me a choice of a big enema, which could rupture my bowels or putting an NG tube down my nose, down my throat and into my stomach. He would then pump go-lightly through it. I chose the NG tube. It was a miserable three days, but at the end of it, I was pooping clear. I had a colonoscopy and it revealed two ulcers in my descending colon. The GI was convinced I had Crohn's. I was put on Asacol, Rowasa enemas, Prednisone, Zantac, Metamucil and Mineral Oil. The treatment seemed to make me sicker than I was before. I had to wear pads for leakage and I had to have a special pass in high school to run to the bathroom, so I wouldn't have to raise my hand and wait to get excused. It all seemed extreme, considering I had made my own mess by eating bread and water. How could THAT be Crohn's?

My parents took me for a second opinion by another doctor who reviewed my tests and ordered the Prometheus. My Prometheus came back negative. He determined I did not have Crohn's and weaned me off of all that stuff. I felt a lot better.

Through the years, I've always had a crappy diet. I'd get constipated frequently...for 3-5 days at a time. It was uncomfortable, but I dealt with it. Sometimes I'd get diarrhea. I also had a lot of normal BM's, though. I just attributed it all to having a high-fat, low-fiber diet. I thought maybe I had Irritable Bowel. When I'd go through the diarrhea, it usually seemed to occur when I was really stressed out. So, I attributed it to that too. I never had bloody stools or anything like that.

Within the last four years, I gained A LOT of weight. I'm 5'4 and I managed to get up to 295 pounds. I had always been overweight and moderately obese, but never had I been like that. For years, I had dieted and excersized and never really got anywhere. So, I started to research weight loss surgery. During my search, I came across a surgeon who had been a double board-certified colo-rectal surgeon. I asked him how my "issues" might be affected and when I mentioned the remote possibility of Crohn's he freaked out. He told me a bypass would be catastrophic with a Crohn's patient and said I should not pursue any surgery until I had ruled it out. 

This led me down a road of TESTS.

Let me back up and say that prior to this, I was taking Aleve for everything in my life. At my weight, I had a lot of problems and I was in a lot of pain. Migraines, tendonitis, heel spurs, backaches, menstrual cramps...you name it. I took about 2-3 Aleve, 2-3 times a day EVERY day for at least a year, maybe more. I did not know at the time that this could cause ulcers.

I started with a colonoscopy and endoscopy. The endoscopy revealed a peptic ulcer. I had been taking Prilosec OTC for heartburn. They switched me to Protonix. The ulcer healed and I felt a lot better. The colonoscopy looked clean, but they did a biopsy anyway. The biopsy came back SUGGESTIVE of Crohn's or UC. There were microscopic ulcerations, but no evidence of fistulae or anything else.

My GI told me I had Crohn's and started me on Colazal. I had a small bowel barium passthrough. Everything was normal on that test. I then had the capsule endoscopy...the pill cam. The camera found about 12-13 ulcers in my small intestine. At that point, my GI was convinced it was Crohn's. He never entertained the idea that the Aleve may have done the ulcerative damage. He stopped the Colazal and put me on Pentasa.

I went for a second opinion with another GI. He ordered the Prometheus test...again, it came back negative. I was also not anemic. And, again, seriously obese. He wanted me to go for a third opinion.

The third opinion came from a colo-rectal surgeon and he said he could not determine whether or not I had Crohn's either.

After all of this, I decided to pursue a vertical sleeve gastrectomy, which simply removes 85% of the stomach, but leaves the digestive process completely intact and does not alter the intestines in any way. This is supposed to be a relatively safe operation for people who may have Crohn's or anemia, basically any condition that would prevent one from having a bypass (which results in malabsorption).

I had my surgery on August 15th, 2007. I have lost about 100 pounds since March. That's great, of course. However, now I am dealing with SEVERE constipation. I will go 10 days with no bowel movement and the only way I've been sucessful in getting one is with a fleet enema. I've been nauseated everyday since my surgery, which is not particularly normal. I take Zofran and Reglan for the nausea. I also continue to take Protonix to protect my new stomach and keep heartburn at bay (Prevacid did not work for that). This surgery does increase constipation in normal folk because your stomach can only take about 3 ounces of food at a time. Mine can only handle about 2 ounces. I also have to get 60 grams of protein in per day. So far, I can only get about 30 grams. I can't eat fruits, veggies or whole grains right now because of the protein requirement. Those foods would replace the room in my stomach that I need to have for my protein. I've been taking benefiber and I've started fiberchoice in the hopes that it will help. I DO get at least 68 ounces of water in each day. When constipated, NOTHING seems to help...except the fleets.

Anyway, I am starting to wonder how much of this is my surgery? Can this be Crohn's? I really never had a definitive diagnosis, but I am scared. Crohn's scares the crap out of me. I read some of your posts and you all seem so positive and I just wonder HOW?! The idea of having to go through some of those things really puts me off of life. You've all been through so much...

I stopped taking my Pentasa before my surgery because the capsules are HUGE. Since my surgery, I've been told I cannot swallow large pills anymore. My GI had said if I stopped taking my Pentasa, I'd have to go on Prednisone...which I DON'T want to do. So, I have not been back. I am thinking I may need to go back, though...especially if this continues.

I think the only way to really diagnose me would be to stay off NSAID's for an entire year and then re-do some of those tests.

I am sorry this is so long. I just had to get it off my chest.

Thanks for listening...


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/12/2007 10:10 AM (GMT -7)   
Hi I do not know if you have chrons and only your GI can probably DX that .I am sure you are happy with your weight lost. Have you disgust ensure or a boost formula with your Dr. that might have the extra nutrients like the protien you need. As far as the C you need to get a Dr.'s help with that probably as I would not be able to say much about that. Good Luck and let us know how thingsa go. lol gali

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 11/12/2007 4:01 PM (GMT -7)   
Welcome to Healing Well. I hope you manage to find some answers. If I were you, I would find a top rated doctor and make an appointment ASAP. I was diagnosed with CD a little over 5 years ago. I didn't go in for CD related symptoms, but had a colonoscopy. There were a couple of very small ulcers. They biopsied and that was how I was diagnosed.

I tell you this because just because you don't "feel" like you have CD, you may have it. I suffer from Constipation, not the big D. My CD manifests itself more in joint pain, LRQ pain, fatigue. I could tell you what I do to releive my C, but I am clueless in your case becuase of the surgery.

If you have a hard time finding a good doctor who specializes in IBD, please let me know and I can try to help you find someone.

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 11/12/2007 5:11 PM (GMT -7)   
i doubt you really "caused it all yourself" by eating only bread and water for that week....

I myself have never had to wonder, since I developed fistulas early on that were easily recognizable as Crohn's related....I am sorry it has been such a long process getting to an answer for you. Just keep going to the doc and eventually one of them will give you a definitive answer. Make sure the doc you see specializes in Crohn's / UC.
"All we need is love....love is all we need"


angelcockatoo
New Member


Date Joined Nov 2007
Total Posts : 8
   Posted 11/13/2007 10:57 AM (GMT -7)   
Hey there! Thanks for your response. Unfortunately, I cannot take Ensure or Boost because of the high fat/sugar content in the drinks. I do drink a protein drink each day, which actually makes up the majority of my intake...20 grams. The rest I get from what little food I can eat right now.
gachrons said...
Hi I do not know if you have chrons and only your GI can probably DX that .I am sure you are happy with your weight lost. Have you disgust ensure or a boost formula with your Dr. that might have the extra nutrients like the protien you need. As far as the C you need to get a Dr.'s help with that probably as I would not be able to say much about that. Good Luck and let us know how thingsa go. lol gali

angelcockatoo
New Member


Date Joined Nov 2007
Total Posts : 8
   Posted 11/13/2007 11:01 AM (GMT -7)   

The GI I have been using is the head of the medical board of directors for the Crohn's and Colitis Foundation of America in our area. So, he's got the recommendations. Because of my NSAID abuse, I think right now diagnosis is next to impossible...at least that's what THREE GI's have pretty much told me at this point. Bleh.

I am thinking of trying Miralax...in addition to fiber supplements. Right now I am taking Benefiber and FiberChoice. It's not a whole lot, but it's what I can do with my restrictions right now. I am kind of afraid to take too much of a bulking formula because I worry about that backing me up even more.

What do you use? I know what I can do safely with my surgery, but I'd be interested to know what a Constipation-predominant Crohnie does. If you don't mind...

Thanks!

CrohnieYogi said...
Welcome to Healing Well. I hope you manage to find some answers. If I were you, I would find a top rated doctor and make an appointment ASAP. I was diagnosed with CD a little over 5 years ago. I didn't go in for CD related symptoms, but had a colonoscopy. There were a couple of very small ulcers. They biopsied and that was how I was diagnosed.

I tell you this because just because you don't "feel" like you have CD, you may have it. I suffer from Constipation, not the big D. My CD manifests itself more in joint pain, LRQ pain, fatigue. I could tell you what I do to releive my C, but I am clueless in your case becuase of the surgery.

If you have a hard time finding a good doctor who specializes in IBD, please let me know and I can try to help you find someone.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/13/2007 11:09 AM (GMT -7)   
I take miralax and metamucil and they work great for me. but then I am the odd-ball without a diagnosis--having been on all the meds and two surgeries I am back where I started. mostly my head is in a better place if I forget about what caused it and what is wrong and just deal with symptoms. welcome! yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


angelcockatoo
New Member


Date Joined Nov 2007
Total Posts : 8
   Posted 11/13/2007 11:15 AM (GMT -7)   
I don't think I caused it all myself either, necessarily. The ulcers I developed after that particular instance may have been caused by the severe impaction. My doc specializes in IBD...I just can't really afford the time and the money to keep going. I am thinking of going again once I've given myself the time to heal (if the ulcerations were caused by NSAID use).
Glad Bag said...
i doubt you really "caused it all yourself" by eating only bread and water for that week....

I myself have never had to wonder, since I developed fistulas early on that were easily recognizable as Crohn's related....I am sorry it has been such a long process getting to an answer for you. Just keep going to the doc and eventually one of them will give you a definitive answer. Make sure the doc you see specializes in Crohn's / UC.


Clcaj
Regular Member


Date Joined Oct 2007
Total Posts : 82
   Posted 11/13/2007 11:23 AM (GMT -7)   
I drink 1 glass of water with Miralax and take 1 stool softener (Colasce, without the laxative part) once a day, no matter what (D or C, because my D always seems to be C-related).  I have personally found the fiber stuff (Metamucil, etc.) to have the opposite affect on me - making the C worse.  I also use suppositories instead of enemas.   It seems to help get things started with less cramping. 
 
Another trick that works for me is to eat cantaloupe.  I don't know why, but it seems to help.
 
For pain, you should switch to Ultram or an Acetaminophen (Tylenol) based pain reliever, like Darvocet or Vicodin.   You should never take NSAID's with Crohns or UC.
 
Welcome to the forum and good luck to you!  And congratulations on your weight loss! 
DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/13/2007 12:08 PM (GMT -7)   
Crohns can be such a funny thing, even a little inflammation in a nook or cranny of the intestines (usually the small intestine) that doesn't show up on tests can be enough to cause the symptoms you had/have...have you had a small bowel follow through to get your small intestines checked? A colonoscopy doesn't get through the entire small intestine...I'd keep looking for a GI that is thorough and performs other tests to rule out things like celiacs and such.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/13/2007 5:13 PM (GMT -7)   
I just wanted to say welcome. You may want to start a new post w/ the subject line something to do w/ gastric bypass surgery (even though I know that is not what you had.) There is another lady on here who had the gastric bypass and later found out she had crohns. Im sure she would enjoy chatting w/ you.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 

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