deafness,throat stricture,blood clots,crohns,glucoma

over 35 yrs with ibd. was colitis,then crohns. absesses, so in the 35 yrs of dealing with this illness, I have read here on this forum some very interesting stories. bless us all for putting up with some stupid doctors, and dumb procedures, quiet possibly over medicated issues.

the subject line above is what I am looking for in people to discuss. for example i see strictures mentioned, but they all seem located downstairs. nothing mentioned on first floor. I'm talking maybe 5 inches below jaw? that high up. Anyone? its about 4 mm diameter. didnt realize ibd would cause something like that. it seems very likely it does. always thought is was vasculitis.

lost all hearing at age 25. is that kick in the pants or what?

i was once called the prednisone man. breakfast , lunch, dinner.

amazing drug. its not long term. for me it was. develop glucoma from it? anyone?

currently on remicade since asacol failed me recently when I had p.e and put on warifrin. what a big mistake that was. anyone bleed out from that? it only took two months to lose blood pressure. if you've suffered from these issues , would love to hear from you.. if you haven't , here's your heads up. eat right, see yur doc. maintain your weight and never be afraid to ask a "stupid"question...tbc..

Hi yupyup4,
So sorry for all that you've been through. I was on asacol for a while on and off. Initially it helped with inflammation in part of my colon but the crohns became active else where.

I had a P.E. too about a month ago. I have been really fortunate though that I happened to be at a hospital with doctors that are pretty on top of things. It took the them several days to settle on what blood thinners to use for me since each had a different opinion on which would be safest. The director of critical care wanted me on one that had an antidote available because they were all extremely worried about bleeding issues. In the end I was put on eliquis because though there is no antidote yet they felt like there was a slightly lower risk of bleeds with it and I would not have to have modify my diet and have so much blood work. If I have a procedure I hold the morning dose. Though I have noticed now that I bleed a lot more easily. Scared to think of what would have happened had I been going to some of my previous doctors when this happened. I am supposed to be on it at least 6 months and then we are reevaluating whether I can stop it. Pretty concerned about the fact that I might need surgery before that. Any idea how you ended up with the blood clot other than just the higher risk with crohns? Couldn't find a good reason for me other than the increased risk with crohns, homocysteine that is slightly off and I had been sitting around a lot since my mother's been in the hospital for several months.
I am being watched for glaucoma. How long did it take you to develop it? So far okay but my iop was extremely high for atleast a month around the time I got off a long course of steroids. Just followed up today and it seems to be back in the normal range so hopefully I can stay off steroids.
(( side note: My mother is on warfarin and nearly bleed out though! She got an enormous hematoma in her thigh about a month ago while she was in polmonary rehab and they failed to realize what was going on until her blood count dropped to 5!! Came to find out that while I was hospitalized and unable to visit her, they had started giving her a second blood thinner for no apparent reason!))

hi, i dont know how to reply individually, so will make the most of replying to everyone at same time. scifigal2k,labradorite and duffle. thanks for replying so quickly.it feels good talking to people in same boat..but scifigal, you had several strictures? mine is simply a one "hour glass shaped" esophgueal stricture. it has not moved and an xray of it pretty horrifying as it appears it could snap in two. had it since 2002. a few dialations but hasn't cause much trouble untill i need a endoscopy.

dang, have to go back to thread. crs alert here (cant remember crap).. oh i just had to scroll down. ok so back to scifigal, asacol 6 grams everyday was just unbearable. i wasnt aware studies indicated a fail rate, but b/c of stricture i had to take the lower sized tablet and then it became dielotz?? the funny thing is that was a horse pill so i open the capsul up, and it looked like asecol sized tablet. this i had to do four tablets everyday. disect the big capsule to swallow the little one.. re: blood thinners? you were on them several times?? good grief. whatever for?? if for clot, why just have an ivf filter placed? thats the only thing saving my life right now. no more pill no more thinners. warfarin nearly killed me.

lets see,labradore: i have a severe massive blood clot in right leg. dunno how it got there or why, but it ibd patients are more likely to get them which puzzles me. thus the posting for information.. it seem the doctors scratch their heads, throw drug at you when p.e could common place.. i think they over medicate and sometimes u just have to do research and maybe just say no.. the prednisone is what has ruined me. i know it works great to solve immediate issues.. but long term, it does its worst... Re: glucoma, i had surgery on both eye in 2009.. i cant put a time on it since i was on it for the longest time. there came a time when i was off it for a few years but had to back on. just keep getting checked. thats yur best defense.. and you are very lucky indeed to be in doctors care when the p.e. event took place. i was home, difficulty breathing, and if my blood clotted leg hadnt hurt so much, i probably would of died at home.that kind of luck u had, someone been watching you. how awful what they did to yur mom. did have any legal right to her health? like power of attorney?

Duffle, your story seem so similar to mine. but having just one p.e. in feb of this year and a total bleed out inmay, convinced me no more thinners. with the filter installed they think i am safe. but im mr. pesstimistic. waiting for other shoe to drop it's nerve racking. one transfusion, 12 units and 6 plasma. they threw everything at me to keep me alive. they could not find the bleed.. had to suspect colon.. and warfrin as prime suspects. and oh they were quick to bring in surgeons to remove the colon w/o a confirmation it was the source of the bleed..am sure they threw vitamin k at me, but nothing to take while home. besides, dont you think the filter is beneficial?..its one less pill to take...sorry about yur car accident. pretty lucky to escape any accident these days getting some bruises only. drs offer me same reason to use warfrin then the more agressive thinners. so it was a trial/error thing.. could of lost my life in that experiment.

so in summary so far, we are prone to clots and strictures,likely to placed on thinners which can positive/negative effect, and glucome from prednisone long term use, should be monitored as part of your routine check up. has anyone ever put a listing or post about specific
or rare issues such as i have in subject header above? i have learned alot fro you three. thank you!

i am glad i am here. happy to hear from all of you.

well this reply turned into a novel....
From what I was told by my GI and Hematologist, the higher risk comes from a change in the proteins in the blood that occur during a flare/inflammation. They went into more detail than that but at the time i was still trying to wrap my head around the fact that I had this happening. It also can be from deficiencies such as folate which throw off the homocysteine and cause the blood to clot more easily. I actually had been through a two-week hospitalization for a partial obstruction and gotten out a week before this happened. during this time i was offered heparin and though i know Crohns gives you a higher risk, I was moving around a lot and figured I was already quite anemic i didn't need another problem if i ended up bleeding from it. i also did not realize that it was my GI that had put in an order for it, just figured it was a general precaution from the hospitalist or something. Apparently my refusal of it every day did not make it back to my GI cause he came to see me while I was in for the PE and remarked about how he had ordered the heparin to prevent a PE. So I felt pretty crappy that had i taken that i might not have ended up with this and on the thinners long term, though the doc was pretty good about saying he understood why i would refuse it and that there is no telling whether i would have ended up with it any way. I do wish though that some one would have explained before i had problems the mechanics of why CD puts you at higher risk because i think i would have taken it more seriously. My 'luck' really came from the fact that though i was discharged my mother was still in the hospital so I was sleeping over at the hospital since she was in ICU so i was always there if i had a problem. I went home briefly, which is two hours away from the hospital the day after i had been discharged but i was oddly passing out and dizzy with chest pains and back pains. i passed out the one afternoon and woke up gasping a bit with my cat licking my face and with this bizarre feeling that i had almost died but i couldn't figure out why or what was provoking the feeling. I started to develop pain in my leg but i thought it was a muscle spasm from the long drives.my heart rate had already been an issue that was being investigated but it had gotten even worse and was 160 if i took even a short walk. the weird feelings had me too concerned to go home again for any length of time so i just spent most of my time with my mother and slept there. I called my doc and she told me to go down to the er and at first thought it was stress because my ekg was fine and discharged me. The next day the pain got worse, she had me come back, ordered a CT which was how they found it. they had been hesitant to do the CT since i had already had 5 in the last three weeks but it needed to be done. Even though i think they should have investigated more thoroughly sooner, had i had some of my previous doctors/ hospitals i think I would have continued to be dismissed. On my side, i am so used to being dismissed and was leaning toward the symptoms being from new meds that i don't think i was as emphatic with them as i should have been for fear i would not be taken seriously in the future. They have all made it clear though that they do take me seriously especially after that experience.

Did you end up with a filter? It was considered for me but i was too concerned with the risk for it dislodging and more hoping i could get off these meds. how long between when you started the meds and had the bleeding event?

I am my moms health care proxy and she also is relatively young and despite all her medical problems she is totally herself so is able to act for herself except during acute events. we wanted to sue but its pretty hard to win these case though we do have plenty to go on so its still being considered. it was terrible because she was complaining of extreme pain for several days and they just kept telling her to push through it. never went back there! had to go to the hospital and then another rehab that was decent but ended up with pneumonia so she is back at the hospital now (and i basically live there now) and this has all been going on since march when she had to have emergency open heart surgery and had lung complications.

I had an abscess as well that turned into a fistula that i had for three years until i took humira for a while.

Scifigal... Just wanted to say ... I don't have a clotting disorder either, just an increased risk due to this blasted disease. I was initially told I needed thinners for 6 months ... Within a month of stopping ... Got another clot. I assume you intermittent use related to your specific circumstances but thought it worth noting for others that may be reading this ... it is not only those with clotting disorders (factor Leiden v) that need perm thinners ... Some like me need them for life too... Just increas risk person who is a repeat clotting offender.

Hi yupyup, that's terrible, hope you're back to being vertical again soon! Yeah, the filter kind of disturbed me when they mentioned it to me as an option because of course when I look it up I see all the possible things that could go wrong with it. I hope you have only positive results with it! Obviously blood thinners are just as bad in their own ways so there really are no great options. Did you have any bruising while on the thinners? I've noticed the last week or so I've been getting small bruises about the size of a dime. They arent hideous looking but still not sure if I should be concerned or not. I know what you mean about thinking everything is a clot. I had pain in my shoulder blade again a few weeks ago that was similar to the PE pain and my doc told me to go to the ER. The PA from the ER was the same one who saw me many of the times I've come in in the last few months and he got a bit freaked out about it too because he said with me he can't take any chances because it usually is something seriously wrong. Luckily it was fine but I'm up to my 7th CT scan since April.