Hello everyone, I am here doing research for my husband. Six weeks ago he developed diarhea that wouldn't resolve. He went to the local docs and they scoped him and it showed pseudomembranouse colitis, so the diagnosis was c-diff. Went home on flagyl and levaquin. He got progressively worse, going to the bathroom over 20 times a day. They tried Asacol, nothing worked. He developed bloody diarhea and had to go into the hospital for dehydration and anemia. By now, he had tested negative for c-diff 6 different times. They did a second scope and he was all ulcerated, total pancolitis. The doc started talking about surgery and put him on solumedrol and more asacol, flagyl and levaquin. The steriods had some small positive effect and they sent him home where he went downhill, got dehydrated and anemic again. Back to local hospital where his GI doc did blood tests, and KUBs to rule out toxic megacolon. He was put on hydrocortisone IV, asacol and welchol this time, plus the prerequisite flagyl and levaquin. He was in the hospital for 2 days when I insisted he be transfered to Cleveland Clinic because they didn't appear to know what to do with him. He has been in CC for 8 days now, they did a third scope which showed (suprise? no) ulcerative pancolitis. They put him on Pentasa and entocort and solumedrol for 6 days which had no effect as I predicted it would not (still having bloody watery diarhea) and we asked for Remicade, which they told us is my husbands only chance of remission besides a total colectomy. He had his first infusion of Remicade yesterday and we were also informed that one of his cultures tested positive for c-diff. The last 15 tested negative. Today he had a good day, almost NO blood at all (huge change from yesterday), although it is still very loose and frequent. He is on only flagyl and solumedrol and tomorrow he goes to prednisone pills. The GI docs are so wonderful and knowledgeable at CC, I feel so greatful we live only 30 minutes away from the hospital. They are cautiously oppomistic that he may come out of this with his colon (this time. Its clear that this could be chronic). They are really only concerned about frequency, not really consistancy so he isn't doing good in that way. His doc today took away the regular diet and gave him clear liquid, thinking the bowel needed to rest. They want to discharge him thursday if he progresses they way they want him to. This thing has totally broadsided us. My husband is 59 with NO medical history at all. Never sick a day in his life. They kept asking if he got sick when he quit smoking 3 years ago which he didn't, there is no family history of colitis either. He is resistant to all they have thrown at it. I have been reading on this site, trying to prepare us for the surgery if it is nessessary. I would like to think that it will all be okay and even if he has the surgery, he will heal and recover and be okay but the possible things that can happen to the pouch or during surgery are very daunting and scarey. I am sorry this is so long, I guess I am just freaking out. And I am a nurse too, and maybe that makes it worse, knowing alot more than he knows about the all the possible complications. Okay, yeah, I am freaking out......Thanks for listening, Kim

Kim,

When I was first diagnosed four years ago I was taking many meds. I was taking 12 asacol a day and getting worse every day. i keep telling my Doctor that the asacol were going right through me. They finally checked and determined my digestive system was not the proper ph to dissolve asacol. Switched the "colazol" and that along with high doses of prednisone got me into remission. Just a different med to ask about. I have since had step one of a two step due to level 4 dysplasia found which in surgery a cancer mass was determined and I am currently on chemo with an excellent prognosis.
I am thinking of you guys and hope you resolution soon. Jeannie

Thank you so much for responding. I talked to him this morning and he feels great. But that doesn't mean much. He has always felt good except when he gets dehydrated. He feels wonderful except for that pesky diarhea that keeps him anchored to the house. He has never had any other symptoms of UC, no pain or anything. I saw the scope pictures, I can't believe he isn't in agony from the ulcers but he says his gut never hurts. They tried Asacol and Pentasa on him and neither did anything. I will have to ask about Colazol. I would think they would want to try everything on him before surgery since he has no other symptoms other than going to the bathroom too much. I am alittle worried because his H & H is alittle lower than it was two days ago, instead of going up like you would think it would when bleeding slows up. The intern this morning was talking like he thought the Remicade was working but they didn't advance his diet. He will be started on prednisone today, no more IV steriods. I am afraid of what will happen then. Thanks again for writing. The people on here actually give me the feeling that there is life after surgery. Good luck to you also!!! Kim

Hi Kim,

This is a scary and almost unreal time for you and your husband...I remember it well when I was in the hospital, nothing they tried would make me better and we were completely taken by surprise with it all. I was hospitalized for a month with no warning and my husband was left to cope with me and all that entailed, work, our home and children. Then a surgery that we had never heard of and all THAT entailed! Now, 5 months later, life is getting back to normal and I have two more surgeries that I am anticipating with confidence...life is back on track (just on a different track)and 5 months ago didn't think I would ever feel this way again. I wish only the best for you and your husband's recovery. Check out this forum often for support.

Shannon

The lack of pain is not necessarily a good sign because obviously, there is significant disease going on in there. It can actually be more dangerous because toxic megacolon can develop without the painful cramping you'd expect. However, that said, I did not have a lot of pain with my pancolitis either, but I did have significant pain from rectal spasms when the flare was out of control. It sounds like they are watching him very closely, so we will hope, like the doctors, that the Remicade is kicking in.

The H&H sometimes falls initially as hydration improves, because of the dilutional effect. It can take days or weeks for the bone marrow to catch up with red cell production in this state.

Jan

No doubt you are freaking out...... But I'm glad you are at CC and things are looking up! Certainly hope they continue that way.

You are at the best possible hospital for this disease. I ended up having emergency surgery to remove my colon less than three weeks after diagnosis. As tough as it was I am happy that I had the surgery and much happier than having to have been on steroids and other tough drugs only to wind up in the same situation. Hopefully, the GI doctors can get things under control but if not your husband is in the best possible place for this type surgery and will be able to be healthy and active again. Hang in there. I know it is a tough ride.

Thank you everyone! Today was a good day, he actually has no visible bleeding which is a huge change from before Remicade AND he went 6 whole hours without a trip to the bathroom. And they are doing daily KUBs to watch for toxic megacolon. He has never had any indication of that and he is also testing negative for c-diff again. They are talking about discharge tomorrow if he does okay with his "GI soft" diet for dinner and breakfast. I am not getting my hopes up though, I don't want him home making me a nervous wreck while he is in the bathroom every two hours. Thats what happened the last time our local hospital discharged him too early. I just wonder if we will ever have another conversation that doesn't revolve around poo?

Since UC is a chronic illness, it will change your lives. But, it does not have to consume your every waking thought. You have to be sure to live life to the fullest during remissions because you never know when the next relapse will be. Also, understand that the initial flare is often the most serious and once it is under control, relapses are most likely going to be minor flares. The worst part is that you really cannot predict how the disease course will run. Some of us have a horrible initial flare followed by decades of remission (that was me). Others have a more simmering disease that is always causing troubles. Still others have cycles of complete remission and major flares. You'll just have to wait and see. But, you can't make yourself nuts about him being in the bathroom. This is coming from a household with two with UC, so we go through a lot of toilet paper!

Jan

Hi Kim, Hang in there. I know EXACTLY what you are going through. If I didn't know better, I'd think you were writing about my husband. Our difference is that my husband was diagnosed with his first bout 6 years ago. However, his first flare was diagnosed as samonilla poisoning. This flare lasted about 3 months, and then went into remission. A year to the date, he flared again, thinking once again he had samonilla and should go buy a lottery ticket. He didn't heal, got VERY sick, was hospitalized, and took almost every drug you quoted. He suffered on and off (mostly on) for the next 5 years. We got Remicade, and he felt better almost a day after the infusion, but it only lasted a short time. Basically he's been flaring for 5 years straight without a break. We should take out stock in toilet paper companies, because we go through a TON! At any rate, this summer Shawn hit a major flare that didn't subside. His body began rejecting his medication, especially the prednisone. Nothing was working. His GI told him that enough was enough, and he honestly didn't think he could save Shawn's colon. We could try Remicade again, or some other new infusion, but he said it would be a bandaid, and Shawn would flare again. He was risking perforating his bowel. UC ran our lives, even though we tried to be a normal as possible. It took my husband and my sons' dad away for the past 5 years. Everything revolved around UC and the bathrooms all over the state. We all really missed out on a lot, not to mention friends who couldn't understand why we cancelled a lot. Mostly, my husbands health was deteriorating and the worry was doing me in. Shawn resisted surgery all of these years. He was NEVER sick, never broke a bone, and had never had a surgery. Having accidents in rush hour and developing diaper rash finally put him over the edge. He chose to do it. If we could do it over, it would have been done during the first year. Honestly, the J-pouch surgery was hell, and humiliating, and humbling (as if a person with UC could be humiliated or humbled any more). After the initial 8 hospital days and a hard week at home, we began to see the light at the end of the tunnel. I know we still have 2 more surgeries to go, and that those, too, will be challenges, but the change in our lives already is worth it. Shawn laughs, sings, jokes, and even let our son show him his new wrestling moves he learned at practice (I know--watch the hernias!) We've gone out to dinner twice (more than we did in the entire previous year!) He doesn't fall asleep as soon as he gets home from work. He can eat almost anything he wants--and can even drink beer when he gets the urge! He went back to work 3 weeks ago, and yes, he still tires easily, but I just want to tell you this so you know that even though an ileostomy seems like a horrific thing, your husband's and your quality of life will improve immensely. Our GI told us that people who've struggled with UC get so used to being in pain and feeling horrible, that they forget what it is like to feel good. This was so true for Shawn. Hang in there, be a support, go to his doctor appointments, be an advocate for him, but most important, get yourself a support system (like this site) and do things for yourself. I find hot baths and red wine to be a great support system!
Seriously, although hard, we are kicking ourselves for not doing this sooner, but grateful that so far, so good. The positives are far outweighing the negatives!! Take care, Lisa

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I was one of those with UC who never experienced the abdominal pain. The last 2 years of my disease (I had UC for about 10 years) were in a state of a severe flare with chronic bloody diarrhea, vomiting, and fevers. My GI was amazed that I had no pain as my colon and rectum were littered with ulcers.

Also, there are many of us who had UC who don't have a family history (me again). It's not common for the disease to hit in the latter years but I know a gentleman who was diagnosed with Crohn's at age 72.

I am sending good thoughts that your husband continues to improve.

Sue

The one thing I cannot stress enough that IBD is so variable in its course that you really cannot make decisions based on other people's experiences. Sometimes that works in our favor, sometimes quite the opposite. That's because since there is always a chance of a full remission, we keep holding out for it. Sometimes, we hit the jackpot and get that remission (and I don't mean living with constant disease that rules your life, but real remission with no active disease). Other times, we hang on and on waiting and hoping for that remission that never comes. The time to cut your losses and have the surgery is when you decide it is time. Hindsight is always 20/20.

So, I'll be sending thoughts of healing and remission your way.

Jan

Wow, I can barely handle 5 weeks of this let alone 5 years. My husband came home today. He seems to be responding to the medication, the Remicade, Asacol and prednisone, plus flagyl for the supposed c-diff infection that he tested negative for. Things seem to be returning to "normal" in the bathroom, slowly but surely. He immediately started doing a bunch of stuff in the garage. I had to insist he stop and lay down. He slept for 3 hours. He is still very anemic and 35 pounds lighter then he was. He gets light-headed when he stands up. He thinks that this thing is like a broken bone or a bad infection. I don't want to bum him out but I sometimes remind him that this will probably not just go away, never to rear its ugly head again. And so many people say that Remicade worked good at first but then stopped working. I just want him to be prepared for surgery if it comes to that. If the UC comes back, the docs have told us that its to the OR for him. I am not really bothered by the ileostomy part of it, but I am worried about all the stuff that can go wrong with the j-pouch. All the things that I have read about in the "help" forum. Do people who are otherwise healthy usually not have any problems with the pouch, or is it pretty usual to have SOMETHING go wrong at some point. Has anyone lived problem free once the surgery is complete? I hate to say it but my husband is not very good at adapting to new situations.

My husband was generally healthy - UC for 25 years and flaring much more frequently. Went for probably 10 years after first flare that hospitalized him before he flared again and was hospitalized. From there, never hospitalized again but went from every couple of years, to annually to a couple times a year to pretty quickly after finishing a course of prenisone (that stuff is just NASTY). THey also pushed the cancer probability and the fact that right now he was in good shape. He had the surgeries at 53 and life's been hell since. Will have the pouch removed and hopefully a life back on Dec. 14th.
BUT...... I've read of people on the verge of death from UC and bounced back right away from the surgery. Healthy would always be preferable but obviously not even close to a guarentee.
For now, if the remicade is working, enjoy life and try not to think about what if because maybe your husband will be lucky enough for it to keep working. Deal with surgery if it comes. We were promised the world and got the opposite but there is no crystal ball.
I'm betting that a man who had to go spend 3 hours messing in the garage (I'm married to one of those and he's gotten himself into more trouble lately trying to do what he used to be able to do) might not initially adjust well (also like my husband) but for the most part, now just handles life for what it is.
Having been thru what we've been thru for the course of the disease and then the past year since step 1, I'd say ENJOY where you are now. Try and let the past 5 weeks go (yeah- I know, not easy to do at all when insanity suddenly becomes your life, you have a hard time shutting it down when things settle a bit).
You can't control if and when he flares again (stinks doesn't it)!
I echo Jan's thoughts she's sending but also wish you peace. Most people don't understand what it is like to be on our side of the fence (NOT fun at all..... and Dennis gets all the real good drugs LOL).
Happy and peaceful days to both of you!

I feel like such an idiot today. I got up and sat here reading different posts, peoples stories, thier ups and downs and bawling my eyes out. I feel like I am losing my mind or having a nervous breakdown or is that the same? There are so many things that happen that I don't know if they are normal or not. He is still going to the bathroom 10 times in 24 hours at least. Mostly at night for some reason. There seems to be no blood but everything just sinks to the bottom of the bowl anyways, I can't tell whats in there. Is he getting nutrition or not? Is it just undigested food? Should we change the medication times? I wish they would have kept him an extra day to observe him going off the IV steriods and starting the prednisone and the Asacol. Asacol never worked for him before, why put him back on it now? When I am going to turn into "a wife with a husband with UC and we are dealing with it" instead of "a wife who is freaking out all the time because her husband is sick"???? Sorry for this stupid post....I guess today isn't a good day.