Crohn's Disease

nerdysal

If anyone has any friends or family willing to send a letter to Mary Harney RE: the long term illness scheme, there is a draft letter now available. If you would like to get a copy of it please send us an email on ibdcampaignforrights@gmail.com and don't forget to visit the website http://www.ibdforlongtermillness.weebly.com!

SPREAD THE WORD- PLEASE!!!

LegacyUser

Took me 6 years to get my honours degree as well It should have been 4! I got deferred in 1st year due to a burst appendix and missing my Xmas exams - which was the start of all my Crohns as the surgeon saw traces of the diseases while removing my appendix. The second time round, 1st year went smoothily. 2nd year was a diff story. Was not able at all n failed 1 exam by 2% and the repeat so was made repeat the year. Worked very hard for 3rd year and got a distinction but 4th year was also a sturggle with numerous flare ups and trips to hospital. I managed to get the extra 10 mins per hour for each exam for 4th year but did not know I was entitled to a room on my own or food which would have made a big difference. I had to spread my 4th year exams out to 3 in the summer which I passed and then project and the final exam to last August. Thank god I had a great group of lecturers who completely understood. They were very accomodating. THe relief to be done was great but that seemed to be when my Crohns came to a head and I had to have the surgery. I think the colleges need to ba made more aware and facilitate students a lot more. If I do go back for the Masters at least now I know a bit more.

LegacyUser

ncmc wrote: »

Hello again all, if you've read my previous posts you may know that my hubby Brian was due to have an ilium resection yesterday to have strictures removed. This was after several hospitalisations with acute blockages.

The surgery went ahead, but when they got in there, they found no strictures, just adhesions caused by his previous surgery in 2002. The adhesions had caused his intestine to stick together and get twisted, which gave him the same symptoms as a blockage. The surgeon went through his intestine by hand twice and freed up the areas affected. He said that everything looked pretty good in there and that there wasn't much evidence of Crohns.

Now, I am taking this as great news, afterall, the less intestine you lose the better, right? And i'm sure that his recovery will be so much quicker as there is no internal incision site.

However, I don't really know much about adhesions, has anyone here every needed surgery to correct them? Is this something that is likely to keep happening again and again? Am I right in thinking that this is a better diagnosis than strictures? Also, what I have read on adhesions say that the more surgeries you have, the more chance they will come back, would that be the case with this surgery, where they didn't actually incise, just freed things up?

Sorry for all the questions, I had done so much research on strictures, never occured to me the problem could be something else!

Hope Brian is recovering well. That is good news that it wasnt more blockages though! Only for the ashesions he would be Crohns free so hopefully this surgery will sort all that I hope his recovery is going well. I have had 2 surgerys and no adhesions so far so I cant help at all Im afraid but do pass on my regards to him for a speedy recovery and a great summer!

The_Conductor

Interesting article here

Enzyme linked to bowel disease inflammation
By Mark Cowen
09 June 2009
Mucosal Immunol 2009; 2: 220–231

MedWire News: Researchers have identified an enzyme that plays a key role in the severity of intestinal inflammation in patients with inflammatory bowel disease.

The findings, published in the journal Mucosal Immunology, may potentially lead to the development of novel therapies to treat patients with Crohn’s disease and ulcerative colitis.

Previous research has shown that the enzyme meprin, which helps to break down proteins in the body and is controlled by a gene called MEP1A, is usually abundant in the latter part of the small intestine and is also present in the large intestine, but at a lower level.

To investigate whether meprin and the MEP1A gene play a role in inflammatory bowel disease, Dr Judith Bond, from Pennsylvania State University College of Medicine in Hershey, USA, and colleagues studied two groups of mice, one of which had been genetically modified to lack the ability to produce the meprin enzyme.

Analysis revealed that mice lacking meprin had more severe intestinal damage after drinking an inflammation-promoting solution than wild-type mice that were able to produce the enzyme as normal.

The team then studied intestinal tissue samples from people with and without inflammatory bowel disease. They found that inflamed tissue from patients with the disease had significantly lower levels of meprin than normal intestinal tissue from those without the disease.

The researchers also found that certain variations in the MEP1A gene were significantly associated with inflammatory bowel disease.

"This discovery is a major advance in understanding the genetic control of inflammation, and of ulcerative colitis and Crohn's disease in particular," said Dr Bond.

Commenting on the implications of the finding, she added: “There's the possibility of predicting who will be susceptible to inflammatory bowel disease, and diagnosing the disease with this information. If we could increase meprin production, or replace it with an equivalent enzyme, there are therapeutic possibilities.

“More studies are needed to understand how meprin influences inflammation, but this is the first association of meprin levels as a key factor in the severity of inflammatory bowel disease."

nerdysal

I received to letters today in the post from James Reilly and Dept Of Health. James Reilly said that he has put a parlimentary question re: the long term illness scheme to Mary Harney. Dept of Health just said that the matter is receiving attention.

Now that we have planted the idea in their heads we NEED to keep pestering them. We now have several drafts available:

1. To Mary Harney from you, the sufferer of IBD
2. To opposition spokesperson for Health from you, the sufferer of IBD
3. To Mary Harney from Family and Friends of people suffering with IBD.

If you wish to receive a copy of any of these drafts please email: ibdcampaignforrights@gmail.com or if you want ideas on how to write your own letter please visit http://www.ibdforlongtermillness.weebly.com

KEEP SPREADING THE WORD

Sara

Whoze

Hey guys sorry for the delay,
Yes I got a letter from my consultant covering my absence, that I was diagnosed with Crohn's, and that he believes I needed 'special consideration' with regards to my finals. I handed the Vice-President a copy of the letter but still had no effect. When the college finally came round and allowed me to take the exams, they told me about the disability consideration (the extra time, allowed to leave for the bathroom, e.t.c), I was so annoyed with the way they handled it I just told them I didnt need anything from them only their permission to do the exams. They never mentioned anything about spreading them out, if they had I would have taken it as it was the stress of all the exams at once that forced the relapse. I havent even thought of the exams in August yet in case it forces another relapse, I'm just taking each day as it comes for the moment.
Here's a story you guys may (or may not) find amusing, my best friend and I have been friends for 5 years now, she was diagnosed with Crohn's 3 years ago, can you imagine how surprising it was for her when I told her I had it too! I told my consultant about it and he said the likelyhood of two friends to both be diagnosed with Crohn's is in the thousands!

Hope the weather's being kind to you all.

Whoze

CathyMoran

Whoze wrote: »

Hey guys sorry for the delay,
Yes I got a letter from my consultant covering my absence, that I was diagnosed with Crohn's, and that he believes I needed 'special consideration' with regards to my finals. I handed the Vice-President a copy of the letter but still had no effect. When the college finally came round and allowed me to take the exams, they told me about the disability consideration (the extra time, allowed to leave for the bathroom, e.t.c), I was so annoyed with the way they handled it I just told them I didnt need anything from them only their permission to do the exams. They never mentioned anything about spreading them out, if they had I would have taken it as it was the stress of all the exams at once that forced the relapse. I havent even thought of the exams in August yet in case it forces another relapse, I'm just taking each day as it comes for the moment.
Here's a story you guys may (or may not) find amusing, my best friend and I have been friends for 5 years now, she was diagnosed with Crohn's 3 years ago, can you imagine how surprising it was for her when I told her I had it too! I told my consultant about it and he said the likelyhood of two friends to both be diagnosed with Crohn's is in the thousands!

Hope the weather's being kind to you all.

Whoze

Am the wife of a crohns sufferer but had a "funny" story with it too - I first met him two years before we started dating in college but went on to do my Masters thesis - I was concentrating on food allergies/intolerences but got interested in crohns as I am a type 1 diabetic and it seemed that our diets would be totally different...when we first started talking my husband told me immediatly about his crohns....

It gets even stranger...I got an ulcer which was treated but still had acid reflux but one summer things got worse and my husband got me to go to his wonderful gastroenterologist who diagnosed me with my illness, my husband litterally saved my life!

Good luck with everything - I know that crohns is a very difficult illness, I found it hard to relate to my husband's tiredness and seeing him in pain is terrible - he has still managed to do everything in life though.

ncmc

Me again, my hubby is still in hospital after having surgery for adhesions on Friday. He was doing really well at first and they had him eating solids on Monday, which I felt was very soon. Now he has been nauseous and vomiting for the last couple of days. He has been put back on a drip and back on liquid only diet. I feel he is going backwards rather that forwards. His surgeon keeps saying that it's to be expected after all the manipulation they did with his intestine during surgery. But i'm really worried, I just have a really bad feeling about it. Has anyone had this experience after surgery? They didn't give him an NG tube after the surgery, I wonder if that is contributing, it's just bile he's vomiting now which is pretty scary to witness.

Whoze

Thanks Cathy,
Its amazing how much people you hear have Crohn's once you or a family member have it, despite the fact it is a relatively uncommon illness.

Hope your husband's well, my friends/family find it hard to cope with my lack of energy/tiredness too, especially my Dad. He'll ask me everyday without fail 'How's the energy today?' but gets frustrated at the fact that one day I could run a marathon but can barely get out of bed the next. I think alot of people are like that, they dont understand that Crohn's can come and go like the wind.

Hope everyone's well

Whoze

MORISH

HI All

Sorry i haven't been on the thread for a long time time flies by when your well.

ncmc how his your husband doing? I hope that he is doing a bit better than your last entry. It can be very hard to watch someone ill and feel helpless.

I'v not been here since just after xmas when i was started on humira which i must say has been a great treatment option for me, my CRP is normal, its never been normal in 14yrs of chrons. I'v just had to have 2 weekly iron infusions for anemia and might need some vit B12 injections soon but apart from that my chrons seems to be ok.

The only thing is i keep getting little infections like infected eczema and UtI's that type of thing. Just wondering if anyone else on humira has the same issues. Although they are a small price to pay for having my chron's controlled.

morish

lip

Hi,haven't been on this in months.Morish,Ive been on Humira since January,haven't suffered UTIs thank God or infections so sorry can't help you there.Its not working as well as I thought it would for me unfortunately.Nothing like I was but still get severe pain at least twice a week.Not sure if there is much left to try after this,think it may be the operating room again.On imuran again too to try and close a fistula,doesn't seem to be doing the trick yet either.I get B12 injections every 3 mths,they do bring my energy up a little.Haven't been offered the iron infusion,must say it to doctor,I'm anaemic too but can't take iron tablets at all,and because I am on a no fibre diet I can't get iron the natural way.
Anyway,hope your husband is feelin better ncmc,it must be hard for you.

MORISH

HI lip

Sorry that humira isn't working out, but having a fistula to begin with will always be difficult, when i had a fistula on my stomach from my last resection infliximab only closed it for a few months and i was only given a 50% chance that surgery would work i was lucky that the surgery did work but there was a debate wheather it was a surgical fistula or a chrons fistula anyway.

I got the iron infusions cos like you i just couldnt take them orally as it made my diahorrea worse so i would stop taking them after a week or so this went on for years but then my HB dropped to 9 and my iron stores were non exsistent so my consultant put me on iron infusions every 2 weeks for 6 sessions only took about 2hrs each time and i feel better for it.

Morish

lip

Hi,iron injections sound just what I need.Had a fistula closed surgically 11 yrs ago,had large bowel removed during the same op.Have had this fistula for the past 6 years but it has gotten bigger in the past year.Was on Remicade infusions for about 5 mths,in which time both Crohns and fistula worsened,have tried Flagyll to try and close it also,but to no effect.Could be worse,I could live with it if the Crohns symptoms were gone.Trying to get up for work,get 4 kids sorted ect is a nightmare some days cos the only painkillers that work for the pain make me drowsy and as I describe it,stupid,can't string words together sometimes.Therefore have to rely on other ones that don't work very well.Sorry,I sound like a real moaner,I'm sure there are a hell of a lot worse off than me.Will definately look into the iron infusion.Thanks

The_Conductor

lip- seriously- you should have a full range of blood tests done. It is possible you may be low in iron- but its equally as possible that you may be low in any of a number of other essentials- you really should get it checked out.

nerdysal

Iron Infusions are brilliant. I've had about 4-5 of them. I was severely anaemic and I can't take supplements and I couldn't get my iron up with diet alone. So my consultant (who retired on Wednesday- so sad about that!!!) gave me these. He got my iron up to a stable enough level. So to maintain it I have red meat 3 times a week and a glass of ribena for vitC with my dinner.

MORISH

Lip it does sound like you have a tough time, it's sounds like they have tried a load of things, did you ever think of trying complimentary medicine, i'm a total conventional medicine person as i see that treatments can work, being a nurse i see the good and bad sides of all treatments but i do belive that other medicines have their place in treatment options alongside the more conventional stuff though, i'm not one to give up everything and go alternative as i belive thats the worse thing for chrons, just my opinion though.

I had accupuncture prior to my last surgery and although it didn't cure me i did feel that it helped, especially with pain control. I don't have children yet, but getting married next year and hoping to start a family straight away, i have often wondered when i'm going through a bad patch how would i cope if it happend when i have kids,would i be able to manage.

I also worry about not being able to concieve and if the chrons would flar up while i am pregnant. I know that with humira there have been a few very successful pregnancies and that the advice is to stay on treatment durning the pregnancy to avoid any flar ups.

Anyway do try get iron infusions as they really will help, have they ever suggested or are you on cubiton drink suppliment for wound healing for the fistula?

Stephen P

I can't believe this thread is still going strong since I started it in March 2007
Just a little recap, I was first diagnosed in 1997/early 1998. Had an operation in August 1998. I've been very well since then with no real pain. I was on Pentasa but the hospital said to come off them in 2005 as I was doing well. I had a colonoscopy in 2007 and they more or less gave me the "all clear". Over the past year I've been getting more severe cramps like the ones I used to get before I was diagnosed. I've only gotten them about 3 times in 12 months and each time they've lasted about 5 minutes. I decided to ask the hospital to have a test done to see what's going on. I had a colonoscopy done last week and it appears that the crohn's is becoming more active again. They took 14 biopsies from my colon. They also said there's ulcers on the colon. I've been passing blood quite a bit lately and I'm starting to get a little worried. I'm back in the hospital in 8 weeks for the results of the biopsies and to see what the next step is. I reckon they will put me back on tablets. How severe does it have to get before they would operate to remove the diseased part? I know that's probably impossible to answer but has anyone else a similiar experience to mine?

Thanks!

MORISH

Hey stephen P

First thanks for starting the thread its amaziong how many of us are effected my this disease. I was diagnoies in 1995 at age 17 but had been ill since 15 but got the usual response that it was stress and my appitite which was non exsistant at the time was questioned in relation to body image so it took awhile for the doctors to take it seriously.

In relation to your question of how bad does it have to be to operated there is no clear cut answer but i'm guessigng that as you have had relatively little treatment over the years they would probably start you on steroids first and see how you respond, surgery in chrons although common is a last resort as it doesn't cure chrons not like ulcerative colitits where surgery can cure the whole disease.

There are so many treatments now that steroids are only used for a short period or in cases where all other treatments seem not to be effective. After the colonoscopy did they not restart you on medication straight away? usually the consultant can see chron's when the colonoscopy is carried out and the biopsies are just to see how extensive it has progressed. Mind yourself over the next 8weeks and if your symptoms get worse dont be afriad to call the clinic cos there is usually and next clinic policy for patients with chron's who have become worse, and they will see you ASAP.

It can be hard when you have had a long period of remission to be ill again, glad you didnt ignore it like me. I had a remission period from 97-03 and i didnt get help till it was too late, ended up with whats called bleeding chrons so had to have a bowel resection in the end which caused a fistula on my stomach from the oprtation wound, ended up off work for a year and had to have a second surgery anyway.

lip

Hi,Morish,have tried Reiki and accupuncture,my friend does it.Did find it very relaxing but didn't find it eased the pain any.Had 2 sessions of accupuncture and 6 of reiki.I would try anything.About having children,I went into total remission during all my pregnancies,4,but unfortunately got flare ups after.I came off all medication while pregnant so I think thats why.My baby is 1 next week,I was fine crohns wise during pregnancy but 5 weeks later it started with a bang,ended up in A&E to get injections for pain and vomiting.Thats when I was put on remicade and every painkiller known to man.But I wouldn't change anything,I have 4 healthy children and I count myself very lucky.I had no problems concieving,quite the opposite T.G..Have never heard of crohns effecting women that way.
Stephen,I took myself off all medication a year after my op in 98,but ended up on steroids a few mths later.I must admit I have been dreadful over the years regarding tablets but I know now I have to take everything given to me.I have osteopenia now due to all the steroids I have had to take and I blame it on myself for not taking the medication.As Morish said,every other avenue will be taken before they will operate.I am surprised the hospital took you off the tablets in the first place as my doctor used to go mad when I would tell him I stopped taking them as they were used to keep me in remission.Hope your'e feeling a bit better.
Going to GP next week for more blood tests,hopefully they come back ok.
mind yourselves.

Ciara D

Hi,

A few of us have created a group on facebook very similar to this if anyone wishes to join also we have a website on writing letters to the government to try and get us regonised on the Long Term Illness Scheme

http://www.ibdforlongtermillness.weebly.com

stickyviki

Hey guys,

Just found this thread. So helpful. Was diagnosed with it January 08.
I was put on Pentasa and Entocort. Stayed on the Entocort for approx. 6months. I felt super! Didn't change anything about my lifestyle (but also got lazy with taking my med's)
So in January of this year. That hideous pain returned, just thought it was a bad cramp(from too many drinks over xmas)!
After a few days, with the pain getting worse and worse, I started losing ALOT of blood from the back passage.
By the time I got to Tallaght hospital my lips had turned blue!

Was admitted straight away, and put on steriods and because I lost so much blood given three blood transfusions. I also was given two packs of iron infusion(but had serious reaction with it. Blood pressure dropped and I passed out) Definately not for me.

Dr. Breslin(who is pretty awesome) took a biopsy of my terminal ilium and it showed major flare up/obstruction.
After being put back on Pentasa and Entocort/Galfer/B12 injections I had been feeling ok since the last relapse. I quit drinking and everything else that is bad for you. I gave up my job running a night in town because I thought it was too stressful and I was getting too tired.
Then last week I noticed the pain return, so back up to Tallaght Hopsital(to the same ward as last time aswell)!!
I had another relapse.

Now I'v been put back on pentasa/entocort/Imuran. What's Imuran like?
Many side effects, since starting it on Sunday. I seem to have a constant pain in my back/arms/joints. Feeling like a sventy year old trapped in a 24 yr old's body.

Would like to know your thoughts on whats a definate 'no-no' foodwise? Any good alternate remedys? Excercise to do etc.?

Any help would be super!
**Cheers x

The_Conductor

I'm not sure that there are definite no-nos regarding food that hold across the board for everyone. It really depends on how you're feeling- something that you may have no trouble with at all one day- will have you in the most excrutiating pain the next.

Personally- I've found anything with MSG (monosodium glutamate) in it to be top of my list of things to avoid. This includes most chinese food, packet soups, and processed food that needs to have flavour enhancers.

I also avoid anything with sweetcorn or maize in it- like the plague......

I can relate to the sore joints on Imuran- what I try to do is use a lot of olive oil in cooking- and do the sorts of exercise that keep my joints exercised as much as possible (I work on the 7th floor of a building- I take the stairs a couple of times a day).

There are other side effects to taking Imuran- you need to make sure you are monitored regularly esp. your white cell count. If it goes low- and it is very possible that it may- you might find yourself very susceptible to every little cold or bug doing the rounds.

If you're on Imuran- make sure you get any flu vaccinations that may be available as soon as they are out.

Stress is a factor with Crohns- as is not getting sufficient rest. You do need more rest than most normal people need- it is annoying- but you do need to factor some additional rest for you into the equation.

Even while in a lot of pain I've found swimming to be very therapeutic- though obviously I'd not be too active if I didn't feel up to it. One aspect of Crohn's that I've always had- was a tendency to run to a low temperature a lot of the time. Swimming helped with this.

Hopefully others will give you a few tips-

Best wishes,

Shane

lip

Hi,been on imuran on and off for the last 11 yrs,have joint pain too but thankfully not bad,sorry I'm no help there..I was taken off pentasa due to my kidney function levels.As smccarrick said,everyone is totally different when it comes to food.I am not able to eat any fibre foods,basically anything thats healthy.I have kept track of everything I have eaten and drank over the last 10 mths and what type of pain and when it occurs.I can find absolutely no links to certain food and the pain.I don't think its what I'm eating anymore,its THAT I'm eating.Its lucky I love my food or I could develop an eating disorder.Don't make the mistake of thinking your'e ok to come off the tablets when you feel better,it will come back as you are experiencing.I did a few times,but never again,I'll be taking everything I'm given religiously.
WARNING-MOAN ON THE WAY......
Today and yesterday have been very bad painwise.Nothing is working,just took Zydol a while ago,starting to feel drowsy but still in bits.Trip to doc tomorrow if its still as bad.They can't really do anything though,he won't give me steroids,he said the next step with the painkillers are morphine based ones which I really don't want.Just really feeling sorry for myself today.My poor kids,had to put them to bed early cos DH working late and I just can't listen to them shouting anymore,and have to give myself humira now too,just to finish the day on a high.
Its great to have this forum,I hate complaining constantly to my husband and friends,especially when they really don't understand.
take care

LegacyUser

Hi guys

Hope everyone is well I have pain back in the lower right hand side again 3 months after my surgery I was put on a 5 day course of Entocort which has settled things a bit I also had vomiting and diarrhoea for a few days but this docs said my crohns couldnt possibly be back. Also I have serious back pain but I developed just before the op and it disappeared for a few weeks after but now its back with a bang. Has anyone experienced this?

Have holidays in 2 weeks and really dont want anything to go wrong while I'm away!

lip

Hi,sorry no help to you I'm afraid.I hope things settle down before your holiday,nothing worse than feeling unwell when your'e away.
Went to GP this morning to get bloods done and to get him to get an earlier app in hospital.He thinks the pain I am getting could be caused by an ulcer and not the crohns.Not convinced,but I'll take the tablets for a week and see.I mentioned the iron infusions and he said I will have to discuss that with doctor at the hospital,he also mentioned injections,but said they're very sore.Anyone had them?

LegacyUser

Does anyone give themselves b12 injections? Im fed up of paying the doc to do it every other week ( im on twice monthly injections) and sometimes i have to go 5 weeks in a row getting them. The GP is making a fortune off me and wont allow me to inject myself.

LegacyUser

Apologies
Should have mentioned i have Crohns and currently am taking Imuran to keep me in a "sort of" remission

The_Conductor

Unregistered wrote: »

Does anyone give themselves b12 injections? Im fed up of paying the doc to do it every other week ( im on twice monthly injections) and sometimes i have to go 5 weeks in a row getting them. The GP is making a fortune off me and wont allow me to inject myself.

I have to get them monthly. My GP gave me an orange (years ago) to practice on- and when she was satisfied I wasn't going to kill myself- was happy enough to let me off to do my own injections.

There are simple courses where they demonstrate how to give different types of injections. Type 1 diabetics and others are often sent on them- I can't see why you couldn't suggest your GP send you on a similar course?

One thing- you will curse giving yourself injections- you can hit nerves, veins and if you're very unlucky worse. If you're cursing the sore injections you get from your GP the odd time- by god- you'll do far worse yourself.

lip

My GP gives me mine too,haven't had them in a while.Didn't realise you could do it at home.Its a disgrace having to pay for them when you get them so often.I give myself Humira injections and a nurse came to the house to show me how to inject myself,maybe you should ask the doctor who you attend at the hospital.The B12 is a very sore and stingy jab,don't think I would fancy doing it myself TBH.

The_Conductor

lip wrote: »

My GP gives me mine too,haven't had them in a while.Didn't realise you could do it at home.Its a disgrace having to pay for them when you get them so often.I give myself Humira injections and a nurse came to the house to show me how to inject myself,maybe you should ask the doctor who you attend at the hospital.The B12 is a very sore and stingy jab,don't think I would fancy doing it myself TBH.

The B12 is a deep intramuscular injection- which is why its so sore. It is possible to do them yourself but you need to discuss this with you doc.