Well here goes.....Not sure where to begin? I will start with my oldest John. I asked him yesterday when he started having pain or symptoms & he said in Middle School. But I never knew anything till he almost graduated! On my husbands side of the family they always dubbed the stomach troubles as the "Theiss" stomach. You eat something then you run to the bathroom 20 minutes later. So apparently John thought he had that too like his Father & many of his Aunts & Uncles do. NO ONE has ever been diagnosed with any IBD's on either side of my or my DH's (= dear hubby) family. Only the end of his senior year in high school did he really start to complain to us about having pain & problems. But as a male & not wanting to really get into such a sensitive issue he still didn't push the issue too much & also realized if he cut certain foods out he could cut back on the bathroom trips. We finally mentioned it to his peds Dr. who sent him for all the usual first workup of blood & stool tests. Not sure of the exact time line in the very beginning. But I know by the time he was finished with his first year of college he was seeing a GI Dr. who wanted scopes & an upper GI & small bowel series done. Fast forward through the summer & not wanting to take off work because he needed the money for college. He started his second year of college having more issues & still no tests done. September & October the low grade fevers started. Constant pain & more Big "D". He would go to a little 2 bit hospital ER near his college. The first time or 2 they just did some tests & blew it off. I don't remember what they prescribed if anything but they would send him home. The next to the last ER visit they thought he had appendicitis but they were not sure. They wanted to go in & do Emergency exploratory abdominal surgery! That's when I said WOAAAAAAAA! Hold on a minute & called his regular peds Dr. & asked for advise. I gave him all the info of blood work & film results that the ER Dr. from this little 2 bit hospital in the middle of no where told me over the phone. 4 hours away from where we lived. Nothing pointed to a definite appendicitis! The peds Dr. said if it was his Son he would send him to a level 3 hospital like Hershey or Hopkins! So that's what we did. Needless to say the Dr. at the 2 bit hospital was not happy! But right after John was sent to Hershey by Ambulance this Dr. called me back & told me he had another Dr. look at the tests & confer with him. They thought that he might have Crohn's so started him on IV steriods & something to make him comfortable before they sent him on his 3 + hour trip to Hershey. That was the first time we ever heard of Crohn's. He spent 4 days in Hershey with no DX. The colonoscopy could not be completed as his bowel was so inflamed they were afraid they would perforate it. He started to feel better on the steroids & went to see his hometown GI Dr. who sent him for the upper GI small bowel testing the day before Thanksgiving. He went back to College the following Monday & the next morning he called crying in awful pain, "D" , & fever. I called his GI right away & he said go back to Hershey as his test's were negative & showed NO CD! My DH picked him up at college & drove him to Hershey ER where they did a MRI or CT? & found 2 [wiki2="Abscess"]abscesses[/wiki2]. One over his bladder & one over his whole appendix area. The next morning they did emergency surgery thinking he had a burst appendix as they could not find his appendix on any of the tests. When they opened him up they found a perfectly pink & healthy appendix tucked under a mess of diseased infected small & [wiki2="Large-intestine"]large intestine[/wiki2]. They took out 7 in. of his large & small intestine along with the appendix & the ileocecum value (spelling sorry). The Dr's still did not know what they were dealing with. Until they got the biopsy back 5 days later positive for Crohn's. The Surgeons said it did not look like Crohn's. He is not symptom free today & has had a small flare but he knows how to control it with his meds & diet. He is taking asecol (SP) & something to help solidify things as his cecum valve is gone.
Sorry so long...To this day I still feel so bad about not realizing all this was going on with him. 11 years ago my DH with our 2 middle son's was in a head on collision & our van rolled on it's side down a 10 foot hill. My DH has had to have 5 major back surgeries. It's been a lot of struggles but he is OK. A lot of constant pain. I am thankful I have my 2 boys & my Husband! It could have been a whole lot worse. It's not an excuse but an explanation of my crazy life!
Now on to Mike the second oldest. He had a lot of the same symptoms as John but tended to be more constipated at times. He started having problems in High School too. I don't think as early as his brother John though. He was DX with Neuro Cardiogenic Hypotension in High School (10th grade). He didn't complain much until his Senior year or after of stomach pain. Almost the same time line as his brother John. Same stubbornness for getting testing done too. He was is Philly going to College & had been in the ER several times for pain. The one time they did a CT they found a pocket of fluid around his appendix area. They thought it was Meakles Diverticulitis. But later testing proved that wrong. Was hospitalized for Constipation. The last time to the ER in his second year of college he had all the classic symptoms of Appendicitis but as we could not go to be with him because my MIL was dieing at the same time. ( Another Crazy Time ) He had a girlfriend with him the whole time. But again the appendix was perfectly pink & healthy. He left the hospital later than a normal appy because he had such bad pain. Also they found "Straw colored fluid". The Dr's never did say What or Why! I will say that my son got jerked around at that hospital & ended up fighting with the Dr's. After that fiasco he finally got all the scopes he was to get done & he was DX with IBS. The GI put him on Pentasas as he still ? . Mike didn't like how he felt on it & now just watches his diet closely. But still is having a issues & pain. He has a lot of stress with college & trying to work his way getting himself through. I still wonder if someday down the road his DX will change. As I think his GI Dr. does too.
Now to Daniel....for a few years he has had that issue of having pain & running to the bathroom after eating something. This was getting worse & more frequent. It would come & go always at the back of my mind if he would end up like his brother John. Last summer he started getting blood in his stool not a lot but a red flag. When we went to his Peds Dr. for a check up we told him what had been going on. He set us up right away with a Dr. in Hershey with a Peds GI specialist. Because of his brothers history. We met a month later with the Peds GI. Who wanted him scoped both ways eventually because of his brothers history also. But first wanted to try the Mirolax to soften things up as it might be causing the bleeding. His reasoning is that sometime there is hard stool at the beginning of a "D" bout that can cause cuts that would bleed. Well that threw him for a tailspin. So we set up the testing & then more things started to happen. His blood tests were elevated but not real bad. His Liver Enzyme GGTP was up slightly but all other liver enzymes were normal. Then he started having issues with his bottom. Graphic here.....He got a large pimple right next to his anus touching it. The Peds Dr. thought it might be an abscess so started him on Bactrum which caused MEGA "D" & nausea. (The Peds. GI likes to use the hometown Peds Dr. to check Daniel out when something comes up then he will see him ASAP or in the ER if needed at Hershey) Like an Evaluation person to out rule any childhood illness & not CD related too! Finally we got Daniel into have his scopes & right away he was DX with CD. The biopsy backed it up a week later. The first 2 months after DX that GGTP liver enzyme continued to go up slowly. But finally came back down to normal along with all the other blood work. As there was just a slight rise in his CRP & SAID rate.
Looking back over my childrens health issues since birth. They all were very sickly with ear infections & sore throat infections. They all had their tonsils & adenoids removed at very young ages plus PE tubes place in their ears. Daniel has had mouth sores & continues to. Never made that connection till recently. Also Daniel had a reaction to an antibiotic at age 4-5 & had Serum Sickness. He ran fevers to 105 + up & down through out the day & night for a month or more. When the fever was up he would cry out in horrible pain & could not use his arms & legs as it hurt too much. He also had 2 or 3 rashes going on at the same time. Hives, BIG HUGE strange amoeba looking rash, & reddness around his joints.
