Hi UC wife from another UC wife.....I know exactly what you're going through. It is so scary and such a feeling of helplessness until you get on track. The long and short of this is what works for one does not necessarily work for another. There are a lot of different meds and unfortunately when trying one you have to give it enough time to see if it is going to help.
There is no magic pill for this disease and it is chronic. The goal is getting it into a remission and hopefully keeping it there and if and when it flares again it becomes manageable.
My husband was in the same boat as yours when I just couldn't stand it any longer. He was seeing the Dr every month and not responding to the various things they would put him on. The pain, constant trips to the bathroom and fatigue from not getting any sleep at all due to the constant bathroom trips is just so rough. Weak, dizzy, close to passing out, not wanting to eat as it hurt so bad to go to the bathroom and he wanted to not eat to try to ward off going to the bathroom which was not good. The suffering he was going through and me was just too much which escalated a few weeks after a visit to the Dr. He stayed in 24/7 unless it was a Dr appt.
I spoke with his Dr and she agreed and I brought him to the hospital and he did end up being admitted. The extreme pain is why they would NOT release him and send him home. He was given IV's, pain meds in the IV every 3-4 hrs, needed 3 units of blood and in the hospital for 5 1/2 days. CT Scan, stool testing, blood work among other things but pain management and starting Imuran was the main focus. He was released and is still on pain meds. He has a pain patch every 72 hrs and morphine sulf pill twice a day. I am not pleased that he needs the pain meds but it is now 4 1/2 months and the Imuran I think is starting to get him into a remission. I wish he did not need the pain meds. They do not space him out and keep him in a fog it allows him to be functional and gave him his personality back. Your husband needs something to help his pain and give him some relief. (I don't want to sound like a pill pusher but it is inhumane to allow a person to remain in severe pain. We don't do that to our animals!!)
The rectal meds I heard about
here I spoke to the Dr about
and she prescribed Colocourt which I administer for him. We started them on June 26th and on July 2nd he felt well enough to go out to a birthday party at someone's house. We only went out for a few hours and came right home. He was a recluse - only going out to the Dr due to the constant urgency, bathroom trips and diahreaa. The past few months there were good days and bad days. This past month more good days than bad.
It will be very tough for you. I had my moments where I felt so helpless and useless. No matter what I did and tried to do to help him or try to make things more comfortable. My husband is a very gentle, loving, sweet guy and during the height of the flare he was cranky, short tempered, basically a different person from the guy I knew for the past 39 years. He would apologize and be so annoyed with himself for "losing it" but couldn't help it. So be prepared and get "thick skinned" and when you need to let it out take a shower and cry in there. I tried very hard to be strong and not melt down in front of him and get him more upset. Sometimes emotions just kicked in and couldn't hide it. Also this place will be a comfort to you too in addition to giving you much needed information.
When he was admitted the very next morning his Dr came in and asked permission to put in a referral to the Mayo Clinic as she was most concerned that he was not responding and just didn't want him going through this any longer even though we were going to try the Imuran drug. Even though he looks to be responding to this medicine and the testing is showing that the drug is ok for him she thinks it is still a good idea to go to the Mayo clinic which we are doing on Monday.
I hope this reply is not depressing for you as you can see it has taken 4 1/2 months for him to get to this point. He was however already being treated (unsuccessfully) prior to that due to the "trial and error" nature of this dreadful thing. This has been going on for more than a year to finally be at a point that we are seeing the light at the end of the tunnel.
I have been very insistent, very involved, I go to the Dr with him every month with my typed listing of questions, request copies of everything for our files. He could never do this on his own. It wasn't too long ago that he couldn't even focus or concentrate on anything due to the pain. Even when I would try to talk to him or ask him questions it was too many words -- too difficult to comprehend and he didn't want to be bothered.
We are retired - I don't know your circumstances but your husband has to give in to this and get whatever rest he can get. For about
a month now my husband gets about
5-6 hours of sleep now without waking up to go to the bathroom. Even though he is able to do things when he is home he is resting to try to get better and get the much needed rest this disease requires. (It gets him out of doing the housework things he used to help me with....lol. He owes me bigtime!)
I will keep you both in my prayers and I truly hope he can get some relief soon. You will need to watch for depression too as it can become an issue also.
No question is too silly or too personal here. You will have them. Search through the copious amounts of pages here or do a search. If you don't find what you need post a new topic and you will get response.
Sorry this is extra long.............but I absolutely feel your pain as the expression goes having been there and still trying to get more answers and wanted to try to give you some information from my own personal experience that may help channel some things for you to think about
60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07 July 07 good days & bad days 75mg Imuran 40 mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg