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My Story (long)

Wow. This is the first time I have attempted to chronicle my Crohn's journey. I didn't realize it would take so long to type up.
WARNING: I talk about poop and stuff so if that kind of thing offends you, stop right here.

It all started when I was 35 or so. I started loosing a little weight and didn't know why. I didn't have any typical symptoms. No cramping, vomiting or blood in stool. I did however develop a fistula right next to my anus (I don't know the medical term for it). I initially thought it was a hemorrhoid and so did my physician. I also started to get serious pane at the back of my heels. I thought it was pain from exercising (I used to run stairs) but realized later on it was arthritic pain related to Crohn's. This went on for a few months. I went and saw my physician to ask about the hemorrhoid/fistula and she did blood work and it was normal (or at least that was my assumption as they never called me back). My guess is my internal bleeding wasn't bad enough to raise any alarm bells just yet.
One night I was out with my wife and my fistula was making it uncomfortable to sit. I remember going to the bathroom in the restaurant to pee and had to do everything in my power to not go into a stall to have a bowel movement. I was a pro at holding it so I stuck it out. When we got home I ran to the bathroom and my butt exploded. :stinks: My fistula burst and I knew even before I looked that the bowl was filled with blood. I could smell the metallic scent of blood. The water was almost black but when I wiped, bright red blood. Despite my initial alarm, I felt very good after it happened. It was a huge relief in terms of pressure. I didn't yet know it was a fistula so I was happy it had finally burst as it brought great relief.
I continued to lose weight but couldn't figure out what was going on. My bathroom stops started to become more urgent as well. It got so bad that I would literally go several times a day. I decided to go back to my physician and she ordered blood work. That was a on a Wednesday. Early Thursday morning her office called me and told me to go to the emergency as I was anemic. I called my now wife and told her I was going to the hospital.
When I got there I explained my situation and initially I could tell they thought I was just wasting their time. As the day progressed and tests came back the Dr. who initially thought I was wasting his time told me he wasn't going to let me leave until I talked to a Gastroenterologist. At 4:30 p.m. the Dr. who would become my Gastro guy came in to talk to me. He asked me about my symptoms, looked at my fistula (which was now leaking non-stop) and told me he was pretty sure I had Crohn's disease. I then asked him "What is Crohn's disease?"
He wanted me to go for a colonoscapy and gave me the option of drinking barium that night and doing it the next day or waiting until the following week. It had been a long day so I decided to wait. It was a good thing, the receptionist at his office told me about pico-salax (I think that is how you spell it) which is far easier to ingest and is less explosive than 4 litres of barium.
So I went for the colonoscapy and when it was over I was prescribed - cipro/flagyl and prednisone. I eventually went on Imuran for maintenance. The disease never really went away. I lost weight then gained it back. It seemed to be bad in spring and fall which leads me to believe it may be allergy related. My Dr. told me that if all else fails I would be put on Remicade which was the new miracle drug. A couple of months before my wedding (about 1.5 years after diagnosis) I told my Dr. that I wanted to try Remicade so I could dance at my own wedding without pooping my pants.
I started on Remicade and it worked almost immediately. My work covered it 100% which was helpful. It got me back to about 90% healthy (relatively speaking). Remicade gave me my life back for about 1.5 years. It eventually started to become less effective. I was getting Remicade once every 8 weeks. It got to the point where I was seeing symptoms 2 weeks after an infusion. My Remicade rep told me I should move it to an infusion every 6 weeks. I told her I was feeling symptoms after only 2 weeks. She urged me to just try it. I remember thinking, you don't care about my health at all, you don't want me going off Remicade for profit reasons. I was stunned.
I then switched to Humira and that seemed to work for a month or 2. I liked that I could inject it myself. I didn't have to waste 3 hours in a clinic once every 8 weeks. It started to lose it's effectiveness as well.
After the 2 major medications became ineffective I was out of options. My condition continued to get worse and I even started wearing those adult diapers as I was leaking so bad from my fistula and I was afraid I was going to poop my pants. The fistula made me feel like I always had to go to the bathroom.
I went to see my Gastro guy as I had swelling and redness in my right foot. It was red and swollen. He was the 3rd physician I saw (including my regular Dr.) and he diagnosed it correctly (I forget what it was called). He gave me medication for it. A couple of weeks later I decided to go back and see him as my symptoms were out of control. He decided he wanted to admit me to hospital so I could get prednisone via IV as it was far more effective than pills. I agreed to it. I don't like hospitals but I was so far gone I didn't care at that point. The prednisone didn't seem to help at all.
While in hospital (admitted Monday night, released Friday morning) my Gastro guy decided to also do a Colonoscapy. Tuesday night they wanted me to do a bowel cleanse so they gave me a small vial of salty liquid at 8 p.m. It seemed kind of late to me. I asked the nurse how long it would take to take effect. She said probably within half an hour. I asked her when it should be done. She said probably 11 - 11:30 p.m. I decided I didn't want to wait in bed for it as I wouldn't be able to tell the difference between phantom urges and real ones. So I took my portable DVD player into the bathroom and sat on the toilet waiting for the coming apoopalypse. But nothing came. While I was in Hospital that whole week I had to get up once an hour to poop but now nothing. (I felt bad for my roommates during the week as my squeeky IV wheels were waking them up once an hour as well). Anyway, 1 a.m. rolls around and still nothing. I had finished watching the movie hours ago and was falling asleep on the toilet. I decided to roll the dice and go to bed. 15 minutes later it arrived. I made it to the bathroom but not the toilet. I giant mess. The night nurse and assistant wanted nothing to do with it. They gave me towels and told me to put them in a pile in the corner when I was done. Here I was, feeling worse than I ever had in my life and I was stuck with very unprofessional staff. I thought, hey, you took the job, deal with the good and the bad. So I cleaned up and at about 2:30 a.m. got back to sleep. I slept for an hour before I had to go again. I was exhausted by the morning. It was the worst night of my life.
After the colonoscopy my Gastro guy asked me about removing my large intestine. This topic had come up from time to time in the past and my response was an absolute NO. This time I started with "I really don't like that option" and then he said something that immediately got me on board. "It would mean no more meds and no more Crohn's". That was all I needed to hear. We were coming up on a long weekend even though he suggested I stay in Hospital so I could have the procedure as soon as possible, I asked him if I could go home for the weekend so I could research what life would be like with an ileostomy.
He gave me pain meds (which I needed badly after the colonoscopy as it made my large intestine worse - more on that in a second). I called my cousin who had his large intestine out due to colitis. We got sick at the same time. No other members of his or my family has ever had bowel issues in the past. A terrible coincidence. After talking to him and doing online research I was ready to go for it.
I got admitted to Hospital on a Tuesday (Monday was a Holiday) and was ready to go. My Gastro guy ordered a test to check the condition of my small intestine, just as a precaution. That was at 10 a.m. on a Wednesday. They gave me some stuff to drink and then there was discussion behind the bank of computer monitors. Then more discussion and other staff started to arrive. They told me they were stopping the test and sent me back to my room. A little disconcerting to say the least. At about 11 a.m. a surgeon came in, introduced himself and told me he was going to operate on me that afternoon. He informed me he was going to go in and do as little as he could to get me healthy. I still didn't understand how bad things really were. I thought they were just going to do the procedure I was in for anyway. He also informed me I would be getting a nose tube to empty my stomach of the stuff I had swallowed for the test earlier. Oh Lovely.:eek2:
I called my wife and told her not to bother visiting as I was going into surgery.
The next 2 weeks were a blur. I was in ICU for a while. I started throwing up dark red liquid. Turns out it was backup from my intestines. It was foul. I was in my late 30s when this happened and i had not thrown up since I was 17. The streak was over.I then had what the staff termed as an "Episode". The nurse I talked to a couple of weeks later said she was on duty when it happened. She told me my blood pressure had dropped down into my boots and when she asked me my name I said mmmmhhmmmmhmmm. I don't remember a thing except waking up and feeling awesome. I think it was the drugs.
I remember most of the final 2 weeks in Hospital. I was in Hospital for just under a month. My incision was left open as my Surgeon was pretty sure he would have to go in again. He didn't. So everyday a nurse would come in, remove the bandages, clean my open wound and re-bandage. I remember instructing them on the best technique for causing me the least pain. It took 3.5 months for it to fully heal including my surgeon having to re-open me down to the muscle to cut a couple of stitches that were inhibiting healing. I was left with a 1.5x12 inch scar that was pink and looked like something out of a horror film. No shirt off at the beach for me.
I tried walking every day in those final two weeks but everything took monumental effort. As it turns out, my large intestine was perforated in several spots. Poop had leaked into my abdomen and I had sepsis (blood poisoning). I was about 210 pounds before I got sick, about 180 at the time of the emergency surgery and was now 140 pounds. I had atrophy in most of my muscles. Walking was a chore as my stomach muscles made it very difficult to sit up. I was weak and it pain. I used to go to the bathroom and sit in a chair to brush my teeth and wash up as standing for anything over 2 minutes was too difficult.
I kept begging to go home and finally the surgeon had to explain just how sick I was. He told me that he had taken several cc's of fecal matter out of my abdomen. I asked him if that was a lot and he said "oh yeah". He initially went in arthroscopically but he said anytime he touched my large intestine it would perforate. That's when they decided to open me up and remove most of it. He said it fell apart in his hands. He gave me the ileostomy (which I still have today) and left the bottom 20% of my large intestine in. I was already in surgery for several hours and he didn't want to add another hour removing my anus and fixing my bum. That portion of my large intestine was not diseased. My small intestine also looked fine.
When I questioned my surgeon about how bad it was he told me that if I had waited another week, been up north or was older than 70 I would have probably died. I just wanted to go home.
They eventually asked me if I wanted to go home or stay another 2 weeks to work on getting my muscles back up to strength. Home Please.
Part of the problem in the hospital was the food. It was terrible. I had very little appetite and when I did feel like eating it was something very specific. I subsided on orange Tic-Tacs and arrowroot cookies. They put in a feeding tube and eventually a picc line. I told them I wanted to go home to get some normal food into me. They finally let me go. I spent hours at a time in my lazy boy but I was slowly getting better. I had trouble climbing stairs etc. but every day saw improvement.
I took 3 months total off work. My surgeon said I could have 6 but I was itching to get busy. I was up to about 160 pounds and felt pretty good overall.
I adjusted to life with an ileostomy. I work as an automation developer and started my career as a software tester. My ability to find new and efficient ways of doing things is one of my strengths. I have care of my ileostomy down to a science. I never have blow outs and you can't even notice it under my cloths anymore. It took a few months of tweaking but it is only a minor nuisance now. I don't have trouble discussing it. It is what it is. I once told someone it had some advantages. He said like what. I said that I could have explosive diarrhea right now and it wouldn't matter. I got a smile for that one.
2 years after my emergency surgery I went and had the rest of my large intestine removed. It wasn't doing anything anyway and there was a risk of cancer. I went in on a Wednesday and was home by Sunday. My surgeon originally tried to go in arthroscopically but ended up having to open me up due to scar tissue. When I woke up and saw the bandage I thought "here we go again". Turns out he was able to remove the giant pink scar tissue and he stapled up the incision this time. I was also getting a hernia which was fixed as well. Silver lining.
In the course of my illness I also had a grand-mal seizure. They suspected it was due to being on Remicade. I was put on medication and it is the only medication that I am still on today (just to be safe). I also got a case of shingles which affected my face and eye. It was caught early enough that it didn't do too much damage to my eye. It covered the right side of my face and nose. I would pop the infection parts (they looked like zits) before work so it wouldn't look to hideous. Big mistake. My nose now looks cratered like you see when someone has bad acne for years.
About 5 months ago I started getting mild symptoms. I am getting random arthritic pain. I went to my physician and he doesn't seem worried. He did blood work. Still, I realize that I will probably be dealing with it for life so I decided to join this forum to keep atop of the latest news/ideas/thoughts etc of other Crohn's people.
I am not losing weight, my appetite is fine and so is my energy level. I just can't shake the idea that if it hits my small with the same ferocity that it hit my large, I am in some kind of trouble.
Having said all that, I am living my life. I don't go to support groups for Crohn's or my ileostomy. I know they exist but I don't have time for group hugs. I was asked to go to a meeting to speak about my attitude towards having an ileostomy as it is very positive and it might help others. Apparently some people have a difficult time with it. I guess I can see why especially if you are young. I generally remain positive and live my life. When people ask me about having Crohn's I say "It sucks but some people have it worse, I don't have Cancer or ALS, I am not in a wheelchair or a coma. I can still lead a normal life and so it is a speed bump that I try to devote as little time as possible to."
I guess this forum will now be the exception but being here is good as it may help others and (for me anyway) is less about dwelling on how the disease has negatively affected my life. I also see that I can get lots of tips and info.

Robb Tarte
 
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Angrybird

Moderator
Location
Hertfordshire
Hello Robb and :welcome: to the forum.

Firstly thank you for sharing your story, I think it is a credit to to you that you have been able to come through you have with such a positive attitude. One thing I was wondering is whether the docs ever check your vitamin levels an if so how recently were they done? I will certainly be keeping fingers crossed that the Remi can continue to keep things settled for you.

There is a lot of helpful info here so do have a good look around :)

AB
xx
 
I don't believe my vitamin levels have ever been checked.
I am off Remicade now as it became ineffective (that was years ago). I have not been on any Crohn's related medications since I had my large intestine removed.
 

Angrybird

Moderator
Location
Hertfordshire
Oh I misread that part of your post, if you don't mind me asking what med have you been kept on? It may be worth asking your doc to get your vitamin levels checked, it is common with crohn's to have deficiences in this area and the likelyhood of this increases after ops to remove parts of the bowel.
 
Yikes, you have been through a lot. I just wanted to say welcome to the forum. You have a great attitude. That does help for sure. :ysmile:
 
Hi Pie Guy,

Welcome to the forum it is a great place for information. I have learned so much since I joined. Also I would like to congratulate you on being med free and please keep that great attitude. Are they doing any regular testing to keep an eye on your small intestine?

Also I was wonder what was your colonoscopy results like? Did they show any damage to your large intestine or any of the perforations or where they just found when they did surgery?

I ask because my upper and lower scopes both came back with no-specific inflammation and my GI does not want to change my meds even though I go about 10 times a day mostly mucus and have a bout of bloody poo about once a month.

I am on remicade but it is for my Behcet's Disease and I can not get it increased or moved to every 6 weeks. Thanks for the post and I hope you continue on your path of recovery.
 
Also I was wonder what was your colonoscopy results like? Did they show any damage to your large intestine or any of the perforations or where they just found when they did surgery?
.
My initial colonoscopy showed signs of Crohn's in my large intestine (red inflammation etc). The perforations didn't happen until I was really sick. My large intestine was so damaged it started to break down. I don't think this is common (at least not to the extent that I had it).
 
Oh I misread that part of your post, if you don't mind me asking what med have you been kept on?.
The only med I am on is not Crohn's related....well it is for the seizure I had that they think was a side effect of being on Remicade so I guess I can thank Crohn's for that too. I stopped Remicade a few years ago but I decided to stay on seizure meds just in case it wasn't Remicade related. Last that I want is to have a seizure when I am out on my motorcycle.
 
Thanks for the info. Your case definitely is a first for me, I have never heard of your intestine falling apart. I have come to learn you can have just about anything go wrong digestive wise when it come to CD.
 
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