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angelcockatoo
New Member


Date Joined Nov 2007
Total Posts : 8
   Posted 11/12/2007 9:11 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...


affexs
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/12/2007 11:47 AM (GMT -7)   

My heart goes out to you.  My 27 year old daughter has struggled with very severe, chronic constipation for years.

Her journey (our journey), has also been very long.  She had other symptoms such as syncope,(fainting), very low heart rate and blood pressure, body unable to regulate temperature (freezing when she should be warm, hot when she should be cold), her temperature was always 96-97 degrees, amennorhea (no periods) and involuntary regurgitation of undigested food. This was different than ordinary vomiting; she didn't gag or retch, it was more like a gentle burp and out would come whatever she had eaten..sometimes food from the day before, completely undigested. And nothing, nothing, nothing seemed to work for the constipation...

Went to many doctors; most suggested ridiculous stuff, but none could give her diagnosis.  It took me 18 months of daily web research to find a condition that matched all her symptoms.  Took her to a doctor with a list of tests I wanted done and it was confirmed: she had a very rare disorder called PANDYSAUTONOMIA, which is a neurological malfunction in which the antibodies of her system attack healthy organs and muscle. Thus far it has shut down her pituitary, thyroid, gall bladder, and reproductive system.  It appears to be going after her autonomic nervous system, which includes digestion.  There is no cure at this time.  Some of the symptoms are treatable.  Taking thyroid medication has helped her considerably.  She still struggles with constipation, but it is a little better.  She doesn't faint as much, and isn't as tired all of the time.  Her blood pressure and heart rate are also improved.

Sorry this is too long...for my own journey, I found taking Nystatin while eliminating white food, fermented food, caffiene, yeast and sugar from my diet for three weeks was extremely helpful in combating IBS symptoms such as gas, bloating, and distention.

 


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/12/2007 1:48 PM (GMT -7)   
Wow, that is quite a story and must be very difficult for you.  You obviously have a very complex case and I think your best option would be to go to a major academic medical center that specializes in patients who have had gastric bypass surgery.  I am concerned about the fact that you have not been able to eat high-fiber foods because that could be a significant contributing factor to your constipation.  How much protein are you consuming per day, grams-wise? 
Co-moderator - IBS Forum


affexs
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/12/2007 2:23 PM (GMT -7)   

Hi...I'm not sure that this reply was meant for me as it doesn't seem to apply; neither my daughter nor I have had surgery, or trouble eating fiber.  You may want to check to see who you meant to receive this message. ( My story was re: my daughter's struggle with PANDYSAUTONOMIA. )


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 11/12/2007 2:54 PM (GMT -7)   
Well, for one thing, your bread and water diet almost certainly did not "give" you your problem. Bread may have made you have worse constipation, but neither bread nor water causes ulcers. They must have been there all along and just happened to pick while you were at camp to get worse.

Ulcers are not part of IBS. I can see why your doctor would think Crohn's--which they are a symptom of--but they could also be Ulcerative Colitis, which is not as damaging to the bowels, or maybe an even milder form of general colitis.

Also, have you ever tried a gluten free diet? Food allergies can cause constipation or diarrhea and can even descend to ulcerating the digestive tract if it gets irritated enough. While you may have any number of food allergies, the fact that it seemed to start when you were eating massive amounts of bread makes me wonder about the gluten.

Allergy tests for food are not always 100% correct, so the sure way to test yourself for an allergy is to just go off that food for a while. Try eliminating all gluten if you haven't tried that before.

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/12/2007 3:17 PM (GMT -7)   
My response was to the original poster, angelcockatoo...I was just wondering why her protein requirement is so high.  Although it looks like used the wrong term for the surgery as it was a gastrectomy and not a bypass. 
Co-moderator - IBS Forum


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/12/2007 3:19 PM (GMT -7)   
Also, NSAID-induced ulcerations are very common.  I think it would definitely be wise to stop the use of all NSAIDs to see if this would relieve some symptoms.  Did your docs know how much you were taking of these? 
Co-moderator - IBS Forum


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/12/2007 9:31 PM (GMT -7)   
you might want to visit the crohn's forum, too. I jump back and forth after being diagnosed and undiagnosed with crohns. it is often hard to diagnosis these gut issues. anyway, welcome and keep asking questions. I have no great answers today except I am glad you found this place. 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.

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