How much bleeding is too much

[karj]

Hi guys

I was recently put on steroids again 2 weeks ago because my crohn's is active and am bleeding alot - everytime i have a BM. I am on 2g of pentasa twice a day also. My consultant is still trying to avoid putting me on other meds such as humira or infleximab treatment. But I am still bleeding everyday. I don't know why, and it seems pretty heavy sometimes I mean sometimes my BM is only blood. Don't want to sound disgusting but I am very worried about it I mean surely I can't continue like this? and I could have 6 or 7 BM in day maybe more and blood everytime. I rang my consultant last week and he said to stay on the predisolone at the 30mg dose for another week and see how i get on, a week later I am still having the bleeding. do I need to give the steriods longer to work?

 

[MissBG]

Sorry I don't have any answers for you but I have been wondering this as well. My nurse said I will always have some blood, wether I see it or not.

 

[Kev]

I was losing about a litre every 2 - 3 days. I got to the point where I was so emmaciated that many people (friends, family, co-workers) thought I was dying. I began to think so too. I lost about 70 - 80 pounds, was completely anemic, and ended up in the ER time after time. Blood loss is one thing, but if you are losing weight, and looking paler than you have ever known to be before, then these are warning signs that drastic action is needed.
Mine resulted in a resection. Even a healthy person is hard pressed by constant bleeding.

 

[Sugar]

I was always told by my doc's, any amount of blood in stool isn't good. If your doc is letting this go or taking this amount of blood lightly, maybe you need a second opinion (new doc)

 

[karj]

I was losing about a litre every 2 - 3 days. I got to the point where I was so emmaciated that many people (friends, family, co-workers) thought I was dying. I began to think so too. I lost about 70 - 80 pounds, was completely anemic, and ended up in the ER time after time. Blood loss is one thing, but if you are losing weight, and looking paler than you have ever known to be before, then these are warning signs that drastic action is needed.
Mine resulted in a resection. Even a healthy person is hard pressed by constant bleeding.

Hi Kev
yes i get very pale, my friends and family say so. I am going to ring the consultant today because I just don't think that I can go on. I am not able to perform at work because I have no energy. That is not good when you a teacher and trying to motivate your students everyday and constantly monitor their work.

I don't know if the blood is from rectum or further up, but again sorry for being disgusting when I have the BM I can hear it dripping, would that be from further up?

 

[karj]

I was always told by my doc's, any amount of blood in stool isn't good. If your doc is letting this go or taking this amount of blood lightly, maybe you need a second opinion (new doc)

Hi Sugar
My consultant did suggest admitting me last week and putting me on IV steroids but I thought that maybe I was not giving them enough of time to work.

 

[Sugar]

I don't know if the blood is from rectum or further up, but again sorry for being disgusting when I have the BM I can hear it dripping, would that be from further up?

Hi Karj,
From what my doc's have said, Red blood is from the lower colon, black blood is from further up in the GI tract. After my bowel resection, I was passing black blood. The staple's didn't hold and I was bleeding internally. This blood is very distinctive in color and smell.

Bleeding is due to the ulcers being inflamed and they bleed. The more the blood the more the inflammation is present.

Hope your appt goes well and they get you on the right tract

 

[Patricia56]

They should be doing labs to check for anemia. If they haven't done this recently (in the past week maybe) I would ask them to do this as a way to decide whether you need further treatment.

It does sound like you have inflammation in the rectal vault or sigmoid colon (at the end of the colon) which is where my son had a lot of inflammation. He also had a lot of bleeding, which is not considered "normal" in Crohn's.

You might want to "catch" your stool in something like a bedpan to see just how much blood is really there. A little blood can look like a lot when it's in the toilet water. That way you can tell the consultant more exactly how much blood you are losing which would help him decide what to do. I would make sure he knows that you caught the stool before it went in the toilet.

 

[sickinlk]

hey Karj,
What part of Ireland Ru in? I have UC and was dx'd June 2011. since 1st symptoms in Feb, i have bled everyday with no let up. sometimes its alot and sometimes its very little. sometimes its black and sometimes its bright red.
Its caused for me by the ulcers in my colon being torn everytime i have a bm iykwim and eating a low residue diet has helped lessen it along with steroid enemas.
Its become normal for me unfortunately, but i have never needed iron or a transfusion for it.
Maybe try an enema along with the pred so to treat form both ends. staying on 30mg is not the answer cuz if it doesnt work at 30 it certainly wont work at 25. i would continue to taper. pred didnt work for me either. you need to try something else.
what other meds ru on?
JU

 

[Thermo]

I agree with sickinlk about the enemas, what have you been diagnosed with? With so much bleeding it is very common with UC and if that is the case you need to get some targeted medicine to the area from both ends. Look up the signs of iron deficiency if you are having these symptoms then you are losing too much blood and either need to get your blood work checked immediately or go to the ER. Don't get too alarmed your body can lose a lot of blood make sure you are eating right and trying to replace the blood lose with iron rich foods and in the mean time demand your doctor do something about it or say goodbye to them.

 

[karj]

hey guys
well ended up in hospital after that so I guess the bleeding was too much! last Friday at work i got awful bad bleeding, I was actually afraid I would not make it home, I commute 1 hour 30 to work everyday (something i'm thinking of knocking on the head).

Turned out I was in pretty bad shape, haemoglobin was low. on my 3rd day there I was getting tingling sensations and turns out potassium and calcium were below normal too. So i have probably getting run down for a while. I was wondering why I was so bad at work sometimes - just thought I was getting lazy and told myself to snap out of it.

They gave me IV steroids 400mg a day when I went in for a few days. I had a very painful colonoscopy - less said about it the better but basically was awake for the whole thing because of how inflammed i was the sedatives did not work. So they know where the inflammation is, all the lower section - so they have put me they sent me home on 2g of pentasa twice daily orally, 1g of pentasa twice daily suppositories. 40mg of prednisolone tapering every 5 days, and predfoam enema twice daily.

Have been feeling shockingly weak but today is my first day feeling someway normal.
I can only be on the predfoam for 14 days though - and in my experience it always flare when i stop. i have to go back in a week to get bloods done again. and in another week back to clinic to see what they will do about medication. They are hoping the steroids will settle it down and then the combination of oral and suppositry pentasa will keep it under control.

So off work for next 2 weeks to recover. Spending my time on internet researching crohn's diet. it is amazing what you can find out how easy it is to get those all important nutrients! Must also start keeping a food diary.

 

[karj]

What part of Ireland Ru in?
JU

down the otherside - Kerry think ye might have beat us in the football :wink:

 

[Thermo]

What did they do about the low hemoglobin levels? I have been awake during a. Colonoscopy before as well, I share the horrible memories of that as well! Take care of yourself.

 

[karj]

they weren't low enough that they had to give me a blood transfusion, it was 9 i think? so not dangerously low they said. they said once i start absorbing food again i should start to feel better. i wasn't really absorbing anything and then all the blood was not helping

 

[maria]

Gosh I know how you feel! This went on for almost 2 yrs straight for me! I was scared... I didn't know what to do. My Drs could have cared less. I kept track of how much I was bleeding like 1/2 cup to a cup EVERY TIME I had a BM. I was so Tired and anemic. I finally stopped after they took my colon out a yr after I had a ileostomy. But before the 2 yrs I controlled it with balzalaside. Mine just got worse because I got pregnant.

 

[karj]

Hi guys

I am having a bit of a major set back i think. I had some bleeding last night about 2 blobs. And then I woke up at 6 this morning with D and alot of rich blood in it. I can't understand it I am on 20 different things - 8 pentasa - 8 predisolone - 2 predfoam, 2 pentasa suppositories. i couldn't take the predfoam last night the pain was so paid when it tried,. i managed the suppository. what should i do, i am only out of hospital since thursday and the amount of blood in the D this morning is as bad as i went in. AND i can't sleep one wink because of the steroids, my heart keeps racing. I feel so so so terrible. I feel so so tired as well. I have been watching everything I eat since i came out, i know nothing could have triggered. What options have i now when the plaster has obviously come of only a few days in?

The only other thing that could have triggered it is a stress episode i had a fight with my partner. not want to get in to the ins and outs of it but basically the steroids are making me anxious and i was hoping he would not go to a work party. he went anyway , i ended up home alone climbing the walls from 7 in the morning to about 11 that night and i don't know if that could have triggered it, i am very very very nervous of myself as i get these weak spells out of nowhere, so just did not want to be alone. Do you guys get that - i feel so selfish because of it, and i think i stressed myself out

 

[Aussie]

Hi Karj, in your first post you mentioned Crohns, yet your treatment seems much more suited to UC. If you have Crohns colitis, I would talk to your Dr and consider increasing your Prednisone until remission or add exclusive enteral nutrition and get onto either AZA or 6MP, however, if it is UC, then perhaps you are weaning the steroids too quickly. If your UC is refractory to steroids, talk to your Dr about perhaps cyclosporin or infliximab, make sure they check to exclude a gut infection as a cause.

 

[karj]

Hi Karj, in your first post you mentioned Crohns, yet your treatment seems much more suited to UC. If you have Crohns colitis, I would talk to your Dr and consider increasing your Prednisone until remission or add exclusive enteral nutrition and get onto either AZA or 6MP, however, if it is UC, then perhaps you are weaning the steroids too quickly. If your UC is refractory to steroids, talk to your Dr about perhaps cyclosporin or infliximab, make sure they check to exclude a gut infection as a cause.

Hi Aussie
I have been diagnosed with Crohn's but in the last few years i also have colitis. The prednisone is making me completely loopy as it is, it is a 40mg dose at the moment, i ain't sleeping a wink with it. when i lie down sometimes the room feels like spinning slightly, like that feeling you get if you have had a few drinks too many and you lie down and find you have to open your eyes or you can't breathe? i don't know why they are having this bad effect on me.

 

[Aussie]

Karj, I would get you local doctor to prescribe sleeping pills, especially when you are on high dose steroids - might help you sleep. If you can't tolerate the steroids and you need to get into remission from Crohns, consider enteral nutrition or biologic therapy (Humira or Infliximab).

Best wishes.

 

[karj]

Thanks Aussie, my consultant has been considering the Infliximab treatment with me, but wanted to see if the steroids would help get it under control. Yes I think I will have to get the sleeping pills, if i don't sleep I am going to end up back to square one. I will contact him on Monday I think - was due to go see him Friday 14th but probably need to get in sooner.
Consulted my food diary yesterday 2 to see what i eat, and i eat bread with humus, maybe this didn't agree. Maybe i eat 2 much bread and cos I had few BMs yesterday without blood first, and maybe the BMs triggered the bleeding.
What you guys think about trying to take the predfoam later. My D has settled now because I took some imodium. So thought i should try take the predfoam to see if it stops it again (but I am almost convinced the same thing happened last time on predfoam, i was great for a few days but then started to get very inflamed all of a sudden)

 

[Thermo]

Depending on how blood tests are done over there a 9 is low especially to still be losing blood. Do you take iron supplements? I have a feeling some of your major problems are not necessarily with the steroids but your low vitamin levels. I get some of these same feelings when my iron is low. For example I am at a 9.4 and I am getting iron infusions but I am not loosing blood I just cant absorb iron. thejdubb02 has UC and recently went through his first Remicade infusion maybe if he has time he can let you know how it's going for him. Either way I do not think you can continue this much longer before it becomes an unsafe situation, be sure to go to the ER if needed. I also am sorry to hear about your partner leaving you alone when you needed them. Sometimes all we want is someone to sit with us and tell us it's going to be alright when we are having a bad flare. You may have a chronic disease but you deserve someone who treats you with respect and is willing to inconvenience themselves sometimes when the going gets tough. Good luck and keep positive thoughts.

 

[sickinlk]

HI Karj,
none of the drugs worked for me either im afraid. ive tried nearly all of what your on also including the predfoam and pentasa supps. how long ru on this regime. have you tried asacol or mezevent yet.
i think when you are on the highest dose orally and rectally for steroids and its not helping, its time to consider remicade. im starting it on Friday.
ive never had a let up from bleeding in 18months apart from like yourself 1 or 2 days after starting predfoam.
My GI is taking the top down approach with me now. starting at the top of the medicine tree and once in remission go back to the bottom( 5asa's) and try to maintain.
The only thing is what happens in a flare? Steroids dont work for me.
I have little faith in his idea and fear loosing my bowel is inevitable.
the side effects of the steroids will get better. i was the same as you on them. felt weird in the head, my vision was affected too, i found it hard to focus. i had loads of energy the 1st time i took them but not the 2nd. and my heart would pound too.
i would fly of the handle, called it roid rage as i heard it on this forum.
DO you take them 1st thing in the am? might help with the sleep if you do but on top dose it can be hard. i would fall asleep alright but waken really early and have to get up. it sucks big time.
Ju

 

[karj]

Yes taking them early around 10am after i have lined the stomach. I might go to to see if there is a herbal sleep remedy i can take today in the health food shop. Yes I am frightened that i am going to loose my bowel too. I will have to start remicade i think - no other way around it.
the whole point of sticking to steroids is that you feel the good might outweight the bad but i am having no benefit - only making me completely derranged from i can see
my mind just raises and my eyes just won't relax. then i know it is time to have to take my predfoam and pentasa supp on the morning and that is just the time i wil fall asleep.

 

[karj]

Depending on how blood tests are done over there a 9 is low especially to still be losing blood. Do you take iron supplements? I have a feeling some of your major problems are not necessarily with the steroids but your low vitamin levels. I get some of these same feelings when my iron is low. For example I am at a 9.4 and I am getting iron infusions but I am not loosing blood I just cant absorb iron. thejdubb02 has UC and recently went through his first Remicade infusion maybe if he has time he can let you know how it's going for him. Either way I do not think you can continue this much longer before it becomes an unsafe situation, be sure to go to the ER if needed. I also am sorry to hear about your partner leaving you alone when you needed them. Sometimes all we want is someone to sit with us and tell us it's going to be alright when we are having a bad flare. You may have a chronic disease but you deserve someone who treats you with respect and is willing to inconvenience themselves sometimes when the going gets tough. Good luck and keep positive thoughts.

I haven't taken iron for about 2 weeks because i'm afraid it will upset my stomach - i am trying to get it in my food, i am just afraid of how raw it is.

 

[karj]

Could the anxiety/insomnia from the steroids be actually triggering this because stress is my number one enemy from Crohn's

 

[Aussie]

Unfortunately oral iron can worsen symptoms in Crohns. Have a chat to your doctor and ask for an iron infusion, much more effective. Watch the intramuscular injections as they can leave a permanent tattoo.

 

[karj]

Unfortunately oral iron can worsen symptoms in Crohns. Have a chat to your doctor and ask for an iron infusion, much more effective. Watch the intramuscular injections as they can leave a permanent tattoo.

Thanks for the tip - i'll speak to my G.P tomorrow, I think proactive rather than reactvie is a better approach this time. No point waiting for me to be on the verge of collapse before they tackle things. I think my white bloods cells are outnumbered my red blood cells alot.

 

[littlemissh]

Iron infusions work really well and if you explain the oral iron upsets you they will arrange for an iron infusion. We have venofer or cosmofer in the uk. They don't tend to transfuse blood until you get below 8. Your GP will have to liase with your consultant though so it may be worth going direct to your consultant..or do you have an IBD nurse?

 

[karj]

Yes I will see about this, I might start to feel a bit better if I got some iron and other vitamins in to me.

I managed to take the predfoam and pentasa after that.
I have this grumbling in my left hand side around my back alot - i presume this is the sigmoid colon bit of my bowl that is inflamed. Just have to hope now it settles again. But Remicade is something i am going to discuss with my doctor at my next appointment..

 

[Thermo]

Doctors don't know what it feels like to be so low with these vitamins, so you at times really have to force yourself and your wishes. My doctor knows when I get to 8-10 hemoglobin I always want iron infusions because I get really bad low iron symptoms. This is what really makes me go crazy is having the crawling restless leg and arms plus hearing my heartbeat in my ears and not being able to exercise. I can't stand this for months while it takes iron to reabsorb into my body. Doctors also suffer from a future goal with chronic diseases, they get so use to treating the now they forget to see ahead, which is why you have to get involved in all of your tests and understand them so you can challenge the doctor when he doesn't do something. For example by them not having a plan for your low iron levels they put you at risk of ending up in the ER needing a blood transfusion because you are so low. I am not trying to scare you I am just being honest and trying to help because every doctor does this without knowing and I have been there and thousands of people before and after will be when a human doctor over looks something.

 

[karj]

I am not trying to scare you I am just being honest and trying to help because every doctor does this without knowing and I have been there and thousands of people before and after will be when a human doctor over looks something.

Ya I know, wow didn't know low iron could be giving me them symptoms too! I get restless legs alot, and heart thumping but was putting it down to the oral steroids!

 

[karj]

Rang about my bloods today, Hg was 9.5 on Friday, Ferretin is <1. The people in the blood department think I should get a iron profile thing done. I feel shockingly tired, even after a night sleep - which thank god I slept like a log last night, went for a walk in the fresh air which i think did the trick.

I also have a constant bloating/bubbling feeling in my back left handside and also some light pain on and off. It growls when my boyfriend rubs it!! I wonder are the steroids working at all. Going down to 35mg tomorrow, still taking pentasa + predfoam + suppositories. It think the pentasa supp could be giving me the windy feeling.

 

[Jandeacs]

Ive just been reading all these, Karj you are having a rough time , stress is a huge factor , im just a bit puzzled that no one else seems to have B12 Inections , That was one of the ways they diagnosed my Crohn's as I donrt have the intrisic factor in the stomach thaT absorbs B vits , most IBD patients dont have the intrisic factor , anyway i have a B12 every 8 weeks To replace what the body doesnt make . I used to take my Pred at 6am , you only need a rice cake with it , I really dont eat any fibre at all , no bread of any kind , and when its inflammed just rice and fish for at least three days , I do hope you get some support soon , drink lots of water too , take good care keep talking ok xx

 

[karj]

Ive just been reading all these, Karj you are having a rough time , stress is a huge factor , im just a bit puzzled that no one else seems to have B12 Inections , That was one of the ways they diagnosed my Crohn's as I donrt have the intrisic factor in the stomach thaT absorbs B vits , most IBD patients dont have the intrisic factor , anyway i have a B12 every 8 weeks To replace what the body doesnt make . I used to take my Pred at 6am , you only need a rice cake with it , I really dont eat any fibre at all , no bread of any kind , and when its inflammed just rice and fish for at least three days , I do hope you get some support soon , drink lots of water too , take good care keep talking ok xx

Yes stress is definitely a huge thing in my life. I am an only child and both my parents tend to come to me with all of their problems be it health or other stuff. My mother has had alot of health problems over the years and she is a big worry for me. But I know I have to put those things aside for a while now and concentrate on putting me first for a while.

A few years ago i also tried Mercaptopurine but that did not agree with me at the time but looking back I was also on Flagyl and it could well have been the flagyl that was making feel crap. But I did get awful joint pain, tiredness, loosing hair etc. Wouldn't like to try it again. So the Remicade I think is probably the next treatment. The only reason my consultant is holding off is that I wanted to start a family - am 30 . Obviously that is going to have to be hit on the head for a while, but he said he did not know about pregnancy and infleximab treatment and that kind of scared me off going on it. This is why he was hoping steroids and pentasa as maintenance drug. Will just have to wait for my next clinic date to see the plan. My colonoscopy biopsies will probably be back at that stage too. I think i am going to push for the iron infusion, but my blood tests are not scheduled until Friday.

 

[Aussie]

Hi Karj, current evidence would suggest that Remicade is quite safe in pregnancy (at least until the third trimester). The key with pregnancy and Crohns is that you really need to be in remission when you conceive, if so, you'll likely stay in remission for the duration of the pregnancy, and it sounds like you'll probably need Remicade to come into remission (definitely wouldn't count on pentasa doing much). However, if you're not in remission when you conceive, then it's the rule of thirds - one third will get better (go into remission), one third will stay the same (not in remission) and one third will get worse.

 

[Jandeacs]

ohhh gosh your so young to b e going through all this .. Im sad to hear your parents are burdening you , i can only say that there problems will settle and you will be left still poorly, thats the normal, try to make an appointment with an obstaecrian spelt wrong but you know what i mean he should be able to look out for side effects of Remicade and pregnancy , I hope the biopsies come back good , I know everything is so slow today , all you can do is rest and hope for the best ,
keep smiling

 

[karj]

I read this factsheet about drugs and pregnancy. It does seem to say that being in remission is more important, will research more about it, have plenty of time on my hands to do it now while I'm off http://www.nacc.org.uk/downloads/factsheets/Pregnancy.pdf

yes I have read about the rule of thirds alright. My plan is to give myself the best chance of the next year and I'm determined to stay healthy. This is why I want them to give me a kick start with whatever infusions I need, like the iron for example. It doesn't make sense for them to wait until I absorb myself, that could never happen!!! i'd take iron tablets but like I said already they upset my stomach and that is definitely something I don't want to happen now. But thanks for all the support you are all great .
I like going through other forums to answer any post I can, i just think it is great that we are all helping each other a long.

 

[karj]

Right going down to my G.p in 30 mins. I have this tingling burning sensation all over my lips and i just look like a walking corpse. I don't know if it is panicking I am or what but i don't think I should wait to get my iron profile done until friday. if it is anxiety brought on my steroids fine - but i don't think it is worth taking the chance.

 

[karj]

Hey again guys
Just another update. I am sharing everything because you never know when someone else on this forum will feel the same and hopefully when i figure out what was causing it all it will help someone else!!

My G.P visit was not at all happy about how unwell I looked, so wanted to admit me to A and E but I had absolutely no notion of going to a place where i can't eat proper foods now, i have to build up my strength. So as a compromise she did a blood test and got me to drop them up to the hospital. She checked for the calcium, potassium that i have been low on, these are back to normal levels now. Hg has not dropped any further from 9.5. As a stroke of luck, on the way in with my blood tests I met my consultant's registrar, the girl that mostly dealt with me when I was in hospital. When she saw the blood tests she asked me what was up. So I told her about I have just feel very unwell. I have been sick yes, but I was always able to get on with my day to day life. But these days it is trying me out to wash a cup, have a shower, all little things that just drain my energy. So she checked other bloods. All bloods came back normal. But she said for me to come in to the clinic this Friday so I am going to do that, my appointment with them was not suppose to be another week.

So it is either my crohn's is very bad at the moment or I am having a bad reaction to the Prenisolone. But all day I had burning lips. I looked as pale as a ghost. I have no energy. Yesterday evening I had pixel/blurred vision for about 40 mins, this is the second time I have had that since I started the steroids on 10th August at 30mg. I went up on a 400mg of hydrocortisone when i was in hospital and then back down to 40mg when i came out. after 5 days i am now down to 35mg. I sweat all night (I know this is a side effect, and to be honest id get over that one!!!). I get very bloated in my stomach. I am watching everything i eat so i don't think it is anything i am sticking to bland diet. Last night when i lay in bed on my back, i was rubbing my belly because felt a bit windy and the left hand side had a really hard lump, never noticed before but when i rubbed it it was wind cos started noising.
so i am just going to keep writing down everything and see what the consultant says on Friday. but I am beginning to wonder - could it be the prednisolone that is after making we worse. When I presented to him on the 10th august, yes i was having bleeding everyday, yes i was feeling a little low on energy, but christ i did my days work everyday. Now I am just fit for the scrap heap, I did notice the bleeding got a lot worse after I started them. i just don't know anymore but i really hope friday i get some answer. My aunt who is a nurse and also has crohn's thinks it could be crohn's related symptoms i am having too but it just seems too weird that i only started to feel worse since i started taking this damn drug. Going to read the prednisolone forum today and see if anyone else has had this reaction.

 

[Jandeacs]

Hi karj , oh bless you , having such a rough time , that drop in steriods was ridiculous .. but may i suggest you read about Candida Albicans , I dont want to put ideas in your head but eveything you desrcibed sounds likely , but plz dont dismiss that fact that it could be your Crohn's , have you had any xray type tests recently ? You mention ed the other day that you wre bubbling on that side when your b/f massaged you .
plz take good care and take heart , im still here and Im old ..
Jan

 

[karj]

had a stomach xray done when i was admitted to hospital but nobody ever told me what it said. I have never heard of Candida. the wind/bloating constant rattling problem has just appeared over the last few weeks. But I will ask my doctor about it, is there a test for it or anything? I am reading the Candida Diet website, but so thin now i couldn't go really on a strict diet like that. My appointment is friday so I will see. the first thing i really need i think is to get iron into me. so an iron infusion is priority number one. As i am very pale and my eye lids are pale.

 

[Jandeacs]

Hi karj , Can you explain what kind of stomach xray you had ? did you swallow any liquid first , was it a special machine , like a cat scan or mri scan ? I understand what you are saying about the candida diet , its not important atm , I just thought that relating to the symptoms may ease your distress , I hope all goes well on FRiday , and it is the iron deficiency , and you will feel better soon xxxxx
Jan

 

[karj]

just a normal stomach xray - i did not have to swallow liquid. i had a small bowel x-ray before xmas where i drank the stuff. that did not show any inflammation. inflammation is in the sigmoid colon and rectum according to colonoscopy. i am hoping the biopsy from the colonoscopy will be back friday. have had 4 bloody BMs so i know that something is going on. the predfoam and 2 pentasa suppositories aren't stopping the bleeding. i am doing everything right, eating low residue diet, avoiding foods that would upset the ulcers, eating bland etc, and yet i am not winning but i'm happy enough since it is friday i have the appointment . in fairness the one thing i have to say about my consultant is if you need to see him he will fit you in at short notice.

 

[karj]

more blood BMs last night and this morning so I guess the prednisolone/predfoam/ oral pentasa/supp pentasa combination has stopped working completely . so fed up now i booked 2 weeks off work, and this first week was suppose to be my first recovery week but now i am back to square one. thank god for that appointment tomorrow. Remicade/humira is the only drug group i have not tried yet, so will see if he thinks it is a good idea for me, i think at this stage i am going to try it out.

 

[Jandeacs]

be thinking of you . I hope he gives you some answers , ive got a ultra sound on saturday , prior to yet another consultation for surgery for reversal and removal of gallbladder
stay strong

 

[teagal]

Could the anxiety/insomnia from the steroids be actually triggering this because stress is my number one enemy from Crohn's

Crohns is not caused by stress.

Crohn's disease is an inflammatory condition that affects the digestive tract - including the mouth, esophagus, stomach, small and large intestine, and anus. It can affect any portion of the digestive tract, but is most common in the ileum - the lowest portion of the small intestine, where it connects with the large intestine.

The disease is characterized by active periods, known as flare-ups, followed by periods of remission, during which symptoms diminish or disappear altogether. Its cause is not known.

 

[karj]

well had my appointment today. starting remicade monday morning 9am. So at least he is trying something else now. so will start reading the remicade club on this forum to see how people are doing on it. Thanks for the support it kept me saine the last week.

 

[Thermo]

How did things go on Monday?

 

[karj]

Hi Thermo
Monday went very well, had not reaction at all to the Remicade and so far I have seen a huge improvement. Down to 1Bm a day now, still a little blood in it but i'm sure it will take a while for it to stop completely. I am including psyllium husks in my diet too and that has helped. Still very very tired though but I'm sure energy will start to pick up.

 

[Thermo]

That is great to hear! Did they treat your low iron levels?

 

[karj]

Just told me to start taking a supplement, my hg came up to 10 from 9.5 so i guess it will come up on its own? Iron is 3, ferretin is still <1. I am having a blood test again next week for my next remicade infusion. So I am going to get them to check B12 levels as they have not done that yet.