This discussion board saved my sanity

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Regular Member

Date Joined Nov 2007
Total Posts : 37
   Posted 11/16/2007 2:44 PM (GMT -6)   
I would like to offer a special and heartfelt thanks to everyone who contributes to this, and boards like it. I am thirty-seven years old and I suffer from IBS, I think... My doctors are no longer clear on exactly what I have. I have never been comfortable with the diagnosis of IBS because it is a diagnosis of exclusion. Rule out everything else and it must be IBS. Also, the very name, Irritable Bowel Syndrome, just sounds to me like another way of saying bad stomach ache without a physical cause. If there is one thing I have learned about gastro-intestinal problems is that there is still a great deal we do not know. For such a long time, I have felt like a freak. I was isolated by the notion that I was the only one with this problem that no doctor could get a firm handle on. I found this board with tons of personal stories and accounts of suffering, treatment, recovery, and most of all, hope. As a service to anyone else who finds themselves in my position, I thought I would tell my story and add my experience to the mix. The most important take away from this is you are not alone.

My very first bout of extreme pain happened almost twenty years ago to the day. It was Thanksgiving, 1987. I was athletic, crazy strong, talented, the total package. Throughout wrestling, football, and every other sport and childhood adventure I could throw myself into, I had never suffered injury. My metabolism was miraculous. I could eat without limit or constraint and never gain a pound. I had the invincibility of youth. I, however, was not perfect. I was born legally blind. I have been something of a freak all my life. The only way I knew to overcome it was to over-achieve.

That particular Thanksgiving was notable for two reasons. First, it was by far, the best Thanksgiving dinner I have ever had in my life. We were visiting friends that year. My parents were both fantastic cooks, but these friends of ours were even better. I ate like there was no tomorrow. The second memorable thing about that day is that I experienced real pain for the first time in my life. It happened shortly after eating. It came without warning. Before I could register what was happening, I started screaming at the top of my lungs. I was doubled over and on the floor before too long. This was not the ideal occasion for my first real pain. I had no thought of personal dignity. I was carried to the couch and later taken to the ER. I was given some thick, vile cocktail and drank it down. After about a minute, I expelled one of the most satisfying belches of my life. The ER doctor called it Gastritis and sent me home with a prescription for Tagamet. Thus I received my first incorrect diagnosis and a lifetime of medication.

The second event happened the following year during my senior year in high-school. I was at a school for the blind in Vancouver, WA. I was living in the dorm and on this particular weekend, I was only one of a handful of kids staying on campus that weekend. I was in the house-parent's office at the time of my second attack. Again, dignity could not be spared. It was shortly after a modest, institutional meal that I found myself screaming and rolling on the floor. The agony was indescribable. Another trip to the ER, another cocktail, another prescription, this time, for Zantac, and I was on my way. This time, I was put on a bland diet for quite a long time. Yes, it is possible to have too much Jello.

I was more or less fine for the next seven years. I had smaller attacks on and off during that time, but nothing that sent me to the ER. At about age 26, I started seeing a regular doctor. The Zantac did not seem to be working anymore I needed something stronger. He was the first doctor who actually took the time to listen to me and expressed doubts about the diagnosis of Gastritis. 2005 was the first time I started missing work due to the pain. By this time, none of the Gastritis treatments were doing any good. By that time, I had a job with excellent health benefits and I took advantage of short-term disability. My primary physician suspected a functional bowel disorder and sent me to a Gastroenterologist. This is when I first heard of IBS. I had many months of tests to rule out everything else. Some of the tests were pretty exotic. The most interesting was swallowing a camera pill. The images from that were amazing. My IBS was of the C variety.

I started this story at age 17. Truthfully, I probably should have started it from birth. I think I have always been constipated. I just never knew that normal people had bowel movements everyday. I had movements every two to three days. I was given all the usual medication for IBS. Finally, they came up with Zelnorm. This drug seemed to work just fine if you consider flipping from C to D to be just fine. Eventually, I got so tired of the medication, I just took myself off of all of it. I went back to work and was fine until February, 6 of 2007. That was the last day I worked. An attack hit me on the way to work. Instead of going to the ER, I was able to get in to see my doctor. I learned that Zelnorm had been removed from the market and I was truly up a creek without a paddle.

They started treating my symptoms with anti-depressants and anti-anxiety medications. They talked a lot about serotonin levels. Before I knew it, I was on Xanax, Valium and a ton of nasty meds. I was taking 100 mg of Amitriptyline every night just to get a few hours relief from the pain. I was still taking hyoscyamine and dicyclomine along with vicodin when necessary. I was a mess, and going downhill at breakneck speed. This time, the pain was here to stay, and I had no more real idea of what was going on than I ever did. For the first time, I was convinced that my doctors were also clueless.

Every side effect from the drugs hit me particularly hard. I was so dizzy all the time that I had to walk around with a cane. All those meds made me worse than useless. I finally made the decision to get off of all of the medication and try and deal with the pain some other way. This is easier said than done as some of those meds do not let go so easily. I was soon to learn what withdrawal symptoms were all about. As of this time, I have freed myself of everything except a little bit of Xanax every day and the need for Vicodin as it is the only thing that can address such extreme pain. Yes, I am aware that most of my meds tend to exacerbate constipation.

I was finally referred to a pain specialist. He was great. He asked questions that other doctors had not asked me and looked into things that other doctors ignored. He was the first to say that he did not think it was IBS. He suspected, and still suspects Porphyria may be at the heart of it. The problem is the Porphyria is hard to prove. He was also the first to suggest that a surgical option might be possible. He was thinking of a Colostomy at the time.

My primary was dead set against considering a surgical option but he also did not have any ideas about what to do. I failed to mention that somewhere along the way, my records were sent to the Mayo Clinic. They took a look at it and said that they could not do anything that had not already been done. After much arm-twisting, my doctor finally agreed to refer me to a surgeon. He sent me to someone who he never thought would consider doing it. The surgeon immediately ordered a SITZ marker test. I was not able to complete it. What my doctors had hailed to understand is that by this time, I am incapable of have an unassisted bowel movement. Even laxatives and large amounts of fiber don't work very well for me. But to do nothing for an entire week was more than I could stand. My pain specialist and surgeon got together and last night, I was put on the schedule for a temporary Ileostomy. If that goes well, after three months, they will reverse the Ileostomy and go for a complete colectomy. No way am I going to wear a bag for the rest of my life if I can help it.

I am very computer and internet savvy. I intentionally stayed away from boards like this one because I didn't want to interfere with my doctors' decisions. I did not want to fall into the trap of self-diagnosis. Once I realized that my doctors were clueless and didn't have any answers, I had to take matters into my own hands. I started researching and immediately realized that I was not alone. I started reading about people who were just like me and had been through much the same as I had. This knowledge, alone did more to renew my spirit than any medication. I started to gain a sense of hope. I even believe that I have a better idea of what is wrong with me thanks to all of you. Because of all of you, I now have a reasonable idea of what to expect with the upcoming surgeries. I have a reasonable expectation of getting my life back in the next six months. My ostomy is scheduled for 11/27/07, the Tuesday after Thanksgiving. It is appropriate that this surgery should take place around Thanksgiving seeing as to how my problems began that day, 20 years ago. I will let you know how it goes. You are officially my support group now.

Regular Member

Date Joined Aug 2007
Total Posts : 185
   Posted 11/16/2007 3:20 PM (GMT -6)   
Wow Dan! What a story. Thanks for sharing w/ us. I will keep you in my thoughts and prayers for your upcoming surgery.

I had my colon removal surgery 10/22. I must admit it's been the hardest thing I've ever done. Don't get discouraged if it takes longer than expected and you hit a few bumps in the road. My bowels took longer to wake up after the surgery so I ended up being in the hospital longer than expected.

Had a lot of gas after the surgery and that is extremely painful and since the bowels weren't moving the gas wouldn't come out.

But I got thru it and am at home recovering. You'll need as much support as possible. Even in the hospital the nurses are pretty busy so if there is someone who can stay w/ you it's very helpful. My aunt and my DH took turns staying w/ me. Sleeping in a hospital isn't easy so ppl taking turns is helpful.

Please keep us posted on how you're doing.


Regular Member

Date Joined Aug 2007
Total Posts : 254
   Posted 11/16/2007 6:28 PM (GMT -6)   
Thanks for sharing your story Dan. The folks on this forum are truly a blessing. I, too, felt like a total freak before I found these wonderful people here. Since I've been onboard I am much more comfortable in my own skin. You'll be in my family's thoughts and prayers for your speedy recovery.

Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.

Regular Member

Date Joined May 2004
Total Posts : 277
   Posted 11/16/2007 10:10 PM (GMT -6)   
Yeah, most of us were freaks before we had any sort of surgery anyway.  tongue
I'm going into the hospital on monday for more surgery.  Only 'cause i like the food.
Crohn's for what seems like forever
Bagged in August 2006
Patriots undefeated

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 11/16/2007 10:24 PM (GMT -6)   
right, slice!!!! esp. turkey
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined Aug 2007
Total Posts : 254
   Posted 11/17/2007 11:56 AM (GMT -6)   
Hospital turkey with that gelatinous yellow gravy, yum yum (not)

Good luck with your surgery.

Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.

New Member

Date Joined Nov 2007
Total Posts : 1
   Posted 11/19/2007 10:14 PM (GMT -6)   
You got food in the hospital???? I only ever get an NG tube and and IV, it seems. Bummer. I think they should discount my bill for the cost of the meals I missed.

Good luck with your surgery, Dan. I hope this marks a change for the better for you.

vette guy
Veteran Member

Date Joined Nov 2006
Total Posts : 650
   Posted 11/25/2007 3:30 AM (GMT -6)   
Had this board been around 18 years ago, I probably wouldn't have attempted suicide a month after my surgery. That was definitely the only time i was glad to fail at something. What saved me was going to local ostomy club meetings and reconecting with someone(who had ileostomy surgery right after high school in '78) I went to high school. "Frank" became my role model and my inspiration. Frank doesn't know it, but he's in my will.

Regular Member

Date Joined Oct 2007
Total Posts : 55
   Posted 11/25/2007 6:37 AM (GMT -6)   
Hi Dan,

Thanks for sharing. Like you said: this discussion board saved my sanity. I ended up here after an emergency ileostomy after reproductive surgery complications (it started in my uterus and invaded my colon then my colon wouldn't stop bleeding after they removed the lesions, I was soooooooo high on morphine for soooooo long).

I'm 29 (just turned) and I hd my first surgery at 23. Nothing obliterates (in the nuclear sense) an active social life like surgery. I thought the fallout at 23 was bad, but those were just new friends, it's been those I felt close to who bailed this time. Thankfully, for every one who said or showed they'd rather not remember me in my time of illness there are 2 who said they thought I was fascinating with my bags and suprapubic catheter and funny listing walk.

I enjoyed my ileostomy. I wish I hadn't fought, I wish I'd done it 15 years ago. It was the first time since I was 13 that I lived without pain, passed a movement without a pharmacy of drugs or a towel shoved in my mouth to keep the screams muted. The first time without a cold sweat. My ileostomy was reversed and I've been begging ever since (8 weeks now) for something else. this "work with what god gave you" business is for the birds. god gave me holey colon and a crapload (heh heh) of pain. God also gave me medical science and a way to live life without excruciating pain. We'll see how long I have to campaign before they let me sign up for a new, permanent ostomy.

I wish you the best and thank you for your post. it helped me count my blessings, here on the floor of the bathroom with my cup of peppermint tea beside me (why leave when i know i'll just be scrambling back in a few minutes making chimp sounds and praying this time my anus really doesn't split in half or burn off?)

This board definately is a blessing. Thanks to you all. Again and Again and Again. smurf
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