Hi, I was just dx with crohn's about a month ago. . . I have a pretty long story to tell but I am looking for advice.
I have had pains in the abdominal area off and on but since they were always during very stressful time (like when I defended my thesis, looking for a new job in this economy) I just thought it was stress related and eventually it did go away and I wouldn't have an issue for years. I just recently gotten a new job (back in August) and all was well, until around November. I had been scheduling meetings with some of the companies higher ups and had to prepare so I was trying very hard to impress. About a month before the meetings, I had went out to an all you can eat sushi buffet with some friends and totally gorged myself on what I ordered as well as what they ordered. It was literally the most I have eaten in my life.
That evening, I started to get pains in my lower right quadrant of my abdomen. I really could not sit in the seated position so I went to the recliner. I thought to myself that this pain was not normal overeating pain and that if it persisted or if I did not have a BM I was going to the doctor. This was a Saturday, so on Monday I went to work like a good boy but thinking I had a partial bowel obstruction. After work I went to the urgent care and said I was there for "A partial small bowel obstruction" (from doing research I found that statement pretty much encompassed all the symptoms). The doctor had me get a abdominal xray (just a gross, regular xray) and said he did not find anything but thought that since it was sushi, he feels I may have contracted something and put me on ciprofloxacin for about a week. That made me feel better and life was good.
In the mean time, I decided to change my diet a bit. I religiously eat salads for lunch and am an avid spinner and group fitness fanatic for many years. I thought I would be kind and change to yogurt, and low fiber foods for a while. All was well until Feb 21st when the pains came back. At this time too I was experiencing arterial blood in the toilet after being constipated from my low fiber diet as well as gas pains that would wake me up at night. At this time I went to see a GI doctor and told her of my worries that maybe I could have colon cancer or some sort of hyperplasia/abscess in my small bowel since the pain was more towards the center of the gut. I asked for a CT scan since that would cover the entire small bowel and I explained to her I was diagnosed with IBS/UC when I was 19 and was put on Pentasa 4000 mg/day but took myself off when I changed my life style and basically never went back but new that this fact could increase my risk for colon cancer. She said a CT would only be granted for emergency room visits but agreed to schedule a colonoscopy/endoscopy 2 for 1. The results of that were good. She found internal hemorrhoids, which explained the bleeding, patches of erythmia throughout the colon and that was about it. She took 7 biopsies, but none from the ileum since in the report she said it was "of normal mucosa". From the biopsy results, I was diagnosed with gastritis, duodenitis, and crypitis (in the rectum). I was given hydrocortizone 25% HCL suppositories and nexium and told to have a follow up sigmoidoscopy that June (the colonoscopy was done March 14th).
A week later, the pain in my side came back and I was worried that something was missed so I phoned the office and asked that, in the meantime, I have a fecal lab done to check for parasites since this occurred after eating raw fish. At this time the amount of mucous in my stool increased and sometimes I would have to have a BM it was just a ball of mucous which has never happened to me.
I began retrieving stool samples after getting the kit but I never did finish....
That saturday I began to have pains in my groin area just above the genitals, below the belly button that would wake me up every hour. This again happened into Easter Sunday and again into that following Monday. On easter Sunday, I ate dinner and felt it wasn't passing very well. Monday I did my normal day with the gym before work, spin class after work then home to clean and then bed.
That night I was woken up again every hour with the same pains and at about 3:45 a.m. the pain shot up in level about 10 fold and it would not go away. I woke my fiance adn told her to take me to the emergency room thinking my appendix burst. About 30 m in later I had a fever of 103. I had received a CT and they found a very small abscess where I was having pain and performed percutaneous drainage removing about 2cc of purulent fluid, no catheter just a band aid. They took this and a lot of blood and cultured it up. In the mean time they put me on IV antibiotics (Vancomycin and Zosyn back and forth) and I was admitted to the ICU for observation overnight then downgraded for the remainder of the stay (7 days total). During that time I wasn't allowed to eat or drink for 5 days because of the partial obstruction. They gave me mesalamine (3000 mg/day) and antibiotics. They found the bacteria in the abscess to be clostridium, E. coli, and (I was told) pneumonacocci. The followup MRI showed no overt obstuction but marked thicking of ~15 cm of the terminal ileum.
After I was discharged I remained on mesalamine and was given augmentin, 875 mg 2x a day and that is where I have been since April 29th. Yesterday my blood labs came back and WBC were down from 15.8 on May 7 to 7.2.
I am a little confused for a couple reasons.... I have zero pain in my side. I was told to stay on a low fiber diet and I have. I eat very very well and it has gotten better each day, however, the abscess cavity remains filled with air so that is why I am still on antibiotics. My GI doctor wants to take me off mesalamine and put me on remicade and 6MP. I told her that I was very afraid of these drugs... the surgeon wants to resect the 15 cm of my bowel... no one is speaking of the abscess... I have no fistula and I feel great, I feel normal.. I am back to work but only have this worry about the abscess that is being ignored. I was told that I should at least go on 6MP and I am reluctantly agreeing because what am I going to do? Go on it and say "I feel the same!!! I feel great!!".... I don't get why that, if I am doing very well on the mesalamine, I am eating very well with zero pain, why are they so adamant on changing me over to 6MP or even resecting my small bowel?
This was my first "flare up" I think... I never had urgency issues before or now. I went to see a second opinion and he said to resect THEN put me on every crohns drug and take them off slowly. I guess I don't understand that, if I feel very well, why do they want to move on to all these drugs and not give a chance to see if the inflammation is going down over time with the mesalamine before putting me on the "upper teir" drugs, totally skipping coritcosteriods? I've never had bowel issues before this and I just feel this is a bit extreme since I am feeling so .. back to normal..
Any thoughts? Also, if I do take the 6MP will I still be able to go the gym and have my life as I want or will I be restricted.
Sorry for the long rant, I am just confused since I am feeling so well and it feels odd they are pushing these drugs though the one I am on seems to be working and I'm not sure if it's the right thing to do.
THank you for your time in advance! :redface:
