Imuran!!

i recently went through something very similiar, but it turned out to be my gallbladder!

i started imuran 6/6.  on 6/21 i had severe unrelenting stabbing stomach pain,  severe nausea, headache and vomiting.  i was bad, went to the er where they admitted me. bloodwork and ultrasounds were fine, they did an endoscopy, which showed my usual existing problems (gastristis and gerd) and lastly they did a hidascan which showed my gallbladder was working at 10%.  i decided to wait a few weeks to get it out and in the meantime i would get those pains you described after i ate,  a sharp pain in middle of my breast bone or right under.

i did start taking my meds after dinner and stopped taking my multivitamin and the pains much improved.

i just got my gallbladder out 8/7

but through this all still in remission

it would be interesting to see if its your gb.  and i wonder if there is any correlation between imuran and gb problems?????

@ I love coffee- NO WAY!!!!! Now I'm worried !   Give me you opinion here... I stopped Imuran for approx 3 weeks and had no problems with the pain whatsoever. The pain stopped the next day after I stopped taking it.  The first night after restarting it, the pains showed up immediately (in the middle of night)! and today it was WORSE than ever... I couldn't stand up straight. That's why I'm assuming that the problem is with Imuran. If it were gallbladder, could the pain have totally stopped for those 3 weeks? Also, it's no longer confined to just that stabbing pain just below the middle of my breast bone, my entire stomach hurts this time around (like someone kicked me in it or like I would feel if I had the flu and had been vommiting for an entire day [sorry to gross you out]). But it sort of feels like that soreness all over in that area....

I'm so glad you had your gallbladder removed and I sincerely hope you are feeling much better. I have my hidascan at the end of the month but on Thursday (the day my doc told me to start back up Imuran) she told me not to worry with it because she felt since my sono was good and bloodwork was back to normal, there was less possibility it was gallbladder... so what do you think?

@ disneynut66- I was seriously that close to going to the ER but I hurting so bad that I didn't think I could possibly sit and wait any length of time as I wasn't comfortable in any position at all!!! Everyway I tried to position myself in bed was seriously painful. I am SOOOO sorry you felt so bad.. it sounds worse than my pain (as I wasn't quite at point of begging to die [and believe me I've been there during childbirth]!!! but was at point where I wanted someone to just knock me out until the pain would stop). AND yes, this is the 2nd reason I was thinking Imuran over gallbladder- this pain seems much worse and stayed longer with me (i.e. instead of lasting 2 after after I eat, it starts about 4 hours after I take it and lasts for several hours). I was thinking this was because it slowly builds up in your system (even if I've had 3 weeks off) that the pain just progresses. 

I've seen people talking about this 6MP.... what is this? Is this what I might have to look forward to next?

I don't mind answering the questions at all. It makes me feel like I am paying back for the all the help I received from here.

I go between 6-8 times a day. Sometimes during my period I go a bit more (always at night--I have a little bit of irritable pouch syndrome). It isn't like when I had UC. Don't let the amount of times you go scare you. You are supposed to go pee that many times a day, so you have to change your thinking that it's just like going pee. It doesn't hurt to pee, it shouldn't hurt now when you poop. I usually go once when I get up, maybe once around lunch, once when I get home from work at 3:00 PM and then several times in the evening. That's my most active time. I usually don't wake up to go at night. If I do wake up, it's usually to pee and then I poop, too. It usually only takes a few minutes, it's not painful now (except sometimes during my period when I am dealing with the IPS), and it just empties with my pee. It used to be very liquidy, but now it kind of looks like normal poop. I can hold it when I need to. So, at lunch time when I go pee, I usually go poop. If you get the j-pouch you will find that a lot of times you won't know you have to go. You think you just have to pee and then low and behold, you poop. However, that's not to say I don't have complete control. I have always had control. I was worried that this may be a problem because when they did the anal mammography they said my anal muscles (from a prolonged labor) were a bit weak. It hasn't been a problem at all. Most of my inflammation was in my rectal area. They remove pretty much all of your rectum so the UC really can't come back. They strip it.

I had mine done when I was 45. I was told the younger you are the better the results... I knew surgery was inevitable (it seems these drugs don't work forever) and decided that I was tired of feeling so terrible from the drugs so I took the plunge. I really did my research. I was lucky that the Cleveland Clinic was 5.5 hours from my house. I wouldn't let any surgeons from Indiana touch my colon. I wanted the best that I could reasonably reach. They did a wonderful job and I haven't had any real problems. I went back for my 1 year check a few weeks back and had a wonderful visit. After I had my pouch exam, she said my j-pouch looked beautiful. It's funny because they were having a little team meeting around me before my surgery and when they were done I said, "make me a beautiful j-pouch". She definitely did. The Cleveland Clinic has done studies and they say over 95% of people would recommend this surgery to a friend (lol), no drug is going to get those kind of results. It doesn't hurt to research surgeons. Find one who is very experienced and skilled with doing j-pouches...don't just trust someone who was referred to you by your GI. My GI wanted me to go to a local hospital. I can't imagine what kind of results I would have had.

If you have any other questions, ask away. Also, you can visit www.jpouch.org for more information. They are so wonderful there. Don't let all the horror stories scare you. Most of the success stories are out living their lives to the fullest...something they couldn't do when they had UC.

@ Disneynut66- This certainly helps me to feel better. In my heart I feel I should have this done too. I am about 30 minutes from Johns Hopkins and I believe I will reasearch docs from there. I can't believe you were 45 when you had it done too.... the other bad thing for me is that I'm single. I worry that my boyfriend of 6 years will want to leave... he doesn't act sympathetic or like he gets frustrated when we can't come and go as we please or when I'm sick with UC(which is becoming quite often). Regardless, thank you so much for the information. I have another uncomfortable question to ask... with UC as it is (never in remission), I can barely hold back when I have to have a bowel movement. On 3 occasions it was so urgent that I didn't make it to the rest room (each time while I was driving home). And, at work, sometimes the mucus escapes before I get into the bathroom. Does this mean my anal muscles aren't good enough to go through with the j-pouch surgery after I have the illeoscopy? I worry they will get thru the 1st surgery and then decide not to go thru with the interal pouch surgery.
I seriously thank you for all of your help/information. I don't know ANYONE that has UC nonetheless anyone who has had a surgery as this. I am getting more comfortable with the idea of surgery though.
Again, I really thank you.

Was the prometheus test before you started Imuran? If so, that may be the one. I believe it is a "prometheus" test but there are different tests like this. I think prometheus is a labroratory.

There is another prometheus test they give after you start Imuran/6mp to test whether you're in the theraputic range. It is called 6mmp/tgp and it basically shows your the level of the medication in your blood (in relation to a theraputic range) and the toxicity to the liver. This is a great test while you're finding the right dose of imuran/6mp. I had it quite a few times while my liver enzymes were on the high side and adjusted the dose accordingly. The theraputic range is the goal with these medications, that's the zone where you're getting the most benefit possible. If you go over the theraputic range, you can become neutropenic - this is what happened to me.

I think 100mg of imuran is considered a fairly low dose. Many people take 150mg as far as I see here. The normal dose for 6mp seems to be about 50mg-100mg depending on how your body metabolizes it. I take an abnormally low dose bc fo my blood issue...

have you tried rectal medication? Many of us use Rowasa/Canasa for daily maintenance with luck. There are also steroid enemas and foams that may be helpful and are worth giving a shot if you're having symptoms.

I hope things with your guy improve. Do you live together? 6 years is a long time wihtout a committment but I think you really need to talk about your feelings and make sure he knows that you want that. I totally relate to what you're saying about the cysts, even though I have a SO, I can't stand to go out with these things. I can't imagine how difficult it would be while dating. Do you take birth control pills? They really help mine but they have to have estrogen or I get the zits.

@notsosicklygirl & disneynut66- I went to bed in pain and discomfort (AND, I DIDN'T TAKE THE IMURAN BEFORE BED), I woke up today and have no pain and no discomfort! I haven't eaten anything yet (sort of afraid). Unbelievable! Another day of my life wasted.

#notsosicklygirl- Yes, I was given Prometheus BEFORE starting Imuran (that's a pretty incredible test that it shows the right dose). Do you still have problems with low WBC counts? or did doc give you a different dosage?? You are correct, I am on 100mg of imuran but its killing my stomach. I'm positive it is the Imuran (rather than gallbladder) doing this. It's just too coincidental. When I went off imuran last time, the pain went away in 1 day. then 3 weeks and no pain while I still wasn't taking it. Then I take it and the pain returns. I went off (last night) and wake up and the pain is again gone! Yes, I has luck with the Cortenimas but the Rowasa/Canasa didn't do anything for me. The doctor told me I couldn't keep using it 'forever' but I can tell you, on and off, it has gotten me through the last few years! Especially when I wanted to go on vacations. I'd start a couple days before vacation and used it thru until I came home!!
My boyfriend moved in with me about 2.5 years ago. I've mentioned the fact that I'm seriously worried and considering the surgery and he didn't say much ... he actually said "you know Bill really smelled when he had the external pouch". (Bill is a mutual friend who had to have part of his colon removed and later reattached- he had diverticulitis). I don't take birth control as I had to have a hysterectomy when I was 31 (which was fine as I was divorced then and had my hands full with my two children).
I'm still going to ask the doctor about the 6mp but I'm also going to talk to her about the surgery.
Thanks for all of your input and information. You are very knowledgeable - it seems like you have a very good doctor and yet you still do your research on what he/she is prescribing and ordering (tests).
Thanks again.

The anal mammography test is where they put this balloon type thing up there and I think you have to hold it in and they measure it. Maybe they measure you pushing it out, too? That's good that your babies came via c-section...I'm sure you'll be fine.

I had my surgery done laparoscopically and it was still pretty rough. Obviously you would need a ride home and it would be helpful to have some meals prepared for your return. I didn't need help getting up, but I remember just taking a shower exhausted me for several hours. Hopefully your insurance will pay for a visiting nurse.

Are your kids living with you? If so maybe they could help a bit?

Keep the questions coming!

As far as the Imuran, is that pain one of the side effects? It seems the 3 of us had this...not a coincidence?

First off, I am so HAPPY it can be done laparoscopic... That's great. How long (if everything went well like yours) would I need to take off from work? The anal mammography doesn't sound real comfortable but with all of the medicinal enemas I had to hold, I'm sort of used to that type of discomfort.
I figure very worse case scenario,,, my 18 year old would be able to help. He only works part time (at least until he finds a regular job). But it will be better if my boyfriend hangs in there with me. I've sort of brought it up again this morning. It wasn't the 'lovey dovey' answer I would want, but he did say that the surgery was up to me and it shouldn't depend on him. So I'm thinking he won't like it, but would stick with me through it because he hasn't said "I think I'll be leaving" yet!!
I've never seen a side effect of severe stomach pain or stabbing pain in center just below breasts. That's why I started this post.... I thought I was either the only one OR I needed to have my gallbladder examined! It's definitely the Imuran causing the pain because I am about 95% better today (I have only discomfort just after I eat NOT that pain!)
I live in Maryland, please ask around about surgeons. Also, aren't there different types or shapes of pouch surgeries for UC? Does a doctor that does the j-pouch also do the S and/or W type pouches? I guess my doctor or the surgeon would determine which would be best? You are so lucky to have been able to travel to Cleveland Clinic. It appears that they ARE the pros in this area. It seems that everytime I google to get info and pictures of the different surgeries, the Cleveland Clinic Center has provided the documentation and/or diagrams! I would be willing to fly out to get it done there but not sure if I'd be able to fly back after surgery!! Might be difficult if I'm in pain. Please keep asking around. I will let you know who my doctor recommends. I'm going to check the j-pouch.org site. Since the surgery is laparoscopic, do they send you home the same day? Sorry, the more we 'talk' the more questions I end up having. I had no idea it could be done via laparoscopic surgery.

I did read a few different j-pouch discussions (one was something like j-pouch success rates) and there was one person that complained about how the different clinics lie about the success rates. However, that person was having minor issues. I'd still rather have his/her issues than have the problems I currently have with UC! Also I notice that many followers are still in the forums because they are still having problems.... I guess that, unlike you, once they get the operation and it's successful, they sort of drop off the on the Forums. I'm glad that you stayed on to help people like me ;o)
Oh believe me, after I meet with my doc and get information from her, I will be a searching FOOL. I spent most of the day today searching for info. I seriously can't find any Maryland surgeons that do the j-pouch surgery nonetheless the laparoscopic surgery. I do see there is the Pennsylvania Hospital that does it. I saw Mount Sinai Hospital website (which I thought was Baltimore) thru Google but when I clicked into the website I couldn't find anything on the j-pouch ..??.. Frustrating. I can handle being off only 6 weeks but would prefer to be off only 4 (tops) for either surgery! I hobbled back to work after 4 weeks after my hysterectomy (seriously, I was all bent over and couldn't walk real fast).
Sorry to hear you quit your job but I'm sure you made the right decision. I love the idea of the followup 'telephone' appointment! How many trips did you make to CC in all? Just twice for the two surgeries?? I see where people fly from all over to go to CC- so I don't sound crazy when I say that I would fly there if need be.
Congratulations on your new job!!!!! That is wonderful news.
I'm going to take your advice and start a new topic regarding the surgery. I'm going to talk to doctor first and then will put it all out there on Healing Well. I know she will give me more information that I will undoubtedly have questions about as well. Good luck tomorrow!

casie130:  just to clarify, the severe pain, vomiting and nausea i had in june was a gallbladder attack.  once i got out of the hospital, i would have some mild pain near my breastbone, a little bit after eating dinner and taking imuran. nothing as bad as you are describing.  when you say you dont take the imuran and it goes away then that makes me think it may be the imuran.

i understand about looking into surgery, this disease gets so tiring. 

 

My first days were exhausting. Fun to see all the "cute" freshmen getting lost today :). The reason I didn't go the biologic route was for the exact same reason. My dr. said the same thing. Why poison my body if it probably wouldn't work, and if it did, it probably wouldn't work for that long.

I would love to tell you about my surgeon. Her name is Dr. Tracy Hull. She is fantastic! Like I said, I have had no surgical problems, so she must have done an incredible job. I will keep following you and keeping you positive! I had my first surgery at 45 in January so maybe it's meant to be. Take care of yourself and I'll go check out your post on the ostomy board!