New girl in town.

[Valleysangel92]

Hello everyone. My name is Nicola, Im 23 years old and I was diagnosed with Crohns disease when I was 19. It took almost 5 years to get a diagnosis so it was soon decided that surgery was my best option due to extensive scar tissue so I had a laparoscopic hemicolectomy just 6 months later at the age of 20.

This was successful and put me into remission but it unfortunately didnt last and less than a year later I was back in hospital for a 2 week stay. During this stay I had scans and a week of IV steroids, and was then released with oral pred and an appointment for follow up. Since then I have tried prednisolone, budesonide, pentasa (although my consultant describes it as using a plaster), azathioprine, mercaptopurine and most recently inflectra (the new version of infliximab/remicade). Pentasa has been like taking sugar pills, aza gave me severe abdominal pain and mecaptopurine kept causing my white blood cells to drop to dangerous levels. This sparked an 8 month long battle with the hospital board to get biologics. Eventually they approved inflectra and it seemed to be my answer, I was slowly gaining weight, got off steroids for the first time in two years, was starting to have a real improvement in my symptoms. Alas, it was not to be, and at my 5th infusion I suffered an allergic reaction which sent my heart rate crazy and left me feeling incredibly sick and dizzy . Thankfully the staff were very quick to fix things and nothing more came of it, but they said it was too severe a reaction to try again so I need a be treatment plan.

I have an appointment with my consultant on the 6th July to discuss my next option which looks likely to be humira (or at least that's what Im hoping for) as my veins have been damaged by years of blood tests and cannulations and they were finding it increasingly difficult to get access for the inflectra.

I am very fortunate to have a great consultant and ibd nurse. When I first transferred to adult services (I was under peads for coeliac disease) I had a consultant who kept telling me i was fine and acting like there was nothing wrong, hence taking so long to get a diagnosis. I met my current consultant during the 2 week admission I mentioned earlier and requested to be added to his list permenantly as I found his standard of care much better. Since being under him I have found it much easier to get in touch when something is wrong and been monitored much more closely. He has also proved much more willing to fight on my behalf when action is needed. I have also been lucky to get an amazing IBD nurse who is always at the end of a phone call or email and never fails to help.

Im currently having problems with some very severe pain as my Crohns is unhappy at only being on pentasa, so Im very much hoping to have a plan sorted next week. I have oramorph and mst on prescription so I thankfully have decent pain relief but dont like taking it too often as it makes me feel very out of it. Im frequently told off by doctors for not using pain meds as much as I should.

So, that's me and my very shortened down Crohns story so far. Im hoping to get to know many of you here and I hope I may even help some people too.

[CormorantWatcher]

Hey - tough breaks. Keep on fighting - it sounds like your current specialist will make a difference.

I was/am UC (it's back following a total collectomy in 2008) and have been tried on most of those meds, with either limited reducing to no result or allergic reactions being the norm. I'm now on Humira, which seems to have stabilised things and my specialist (again - it took a fight to get added to a decent list, now hampered by slow response from surgical) is doing some good.

I find that diet, amount of exercise and a whole host of factors seriously affect all the options for medication, which is frustrating as the medication often leaves me feeling like not exercising...

Good luck with it all!

[Valleysangel92 in reply to CormorantWatcher]

Hello, thankyou for the reply I really like my current specialist, I've been under him for two years and he's really made a difference to my care, I know I can always ask him anything if I have any worries or concerns and I know he and my IBD nurse are at the end of the phone if I need any help. Its the polar opposite to my last consultant who couldn't even remember my name!

I'm glad Humira seems to be working for you, I'm hoping its my next medication. Inflectra was really making me feel better until I had the reaction so I was really disappointed to have to come off it. I have heard many good reports about people thriving on Humira after failing inflectra/infliximab so I'm really positive about the prospect of starting it myself, I just need my consultant to agree :). If he doesn't though I'm sure it will be for a good reason.

Diet wise I seem to just have to stick to what I know works for me, as having coeliac as well means I'm fairly restricted and gluten free foods are almost always fortified with extra fiber and a large amount has seeds in it. I find exercise tricky too, as I have fibromyalgia, and I live half way up a mountain so there isn't really anywhere flat I can go to for just a gentle walk, but when I can do it I love walking in the mountains.

Thankyou so much for your reply, I hope you're feeling as well as possible.

Nicola x

[CormorantWatcher in reply to Valleysangel92]

I'm not coeliac, but have a reaction to gluten, so find a GF diet works best - but you're right, unfortunately there are still people who think GF = health fad, so the food is not usually that great. I tried to make my own bread, but it was different every time, so I try to find the best GF loaf in the shop. Other than that, chicken and rice are my friends! Anything with a hard "shell" like beans, peas, other pulses, tomato skins, mushrooms etc all off and I love them all!

When I was at my worst (post collectomy, had lost 5 stone, could barely make the sofa from my bed) I found that keeping occupied and building the exercise (we had a dog then, which helped) speeded my recovery.

Again, all the best.

[overworked1]

All I can say is good luck for the future. My son has UC and PSC and is a similar age to you so remember you're not alone, there are many young people out there who know exactly how you feel. It sounds like your consultant and IBD nurse are fighting hard for your health and they are the best team to have. Keep positive

[Valleysangel92 in reply to overworked1]

Thankyou, I hope your son is doing well. Its surprising isn't it that the stereotype for bowel disease is someone over 60, but I've met and spoken to a large number of people who were diagnosed in their teens and twenties. It seems to me that its actually a minority of people that aren't diagnosed until later years. My team have definitely been a blessing the past few years and I wouldn't be without them now.

[sandybeach12066]

why did it take five years to diagnose?

[Valleysangel92 in reply to sandybeach12066]

Well, when I got my first symptoms of Crohn's, I was under a peads gastro for Coeliac disease and for a while my symptoms kept getting put down to that (even though I had been asymptomatic at diagnosis). After a while of perfect blood tests that proved I wasn't cheating on my diet, they realised it wasn't that. I was given an ultrasound and a barium meal follow through, and was told there was nothing "significant" on either test and they didn't feel it was worth putting me through anything more invasive at that point so they decided on a watch and wait approach. Even though the pain I was getting was persistant, it wasn't neccessarily getting any worse, so they just kept watching. My weight fluctuated a lot and I was always aneamic, but they said it was a teenage girl thing, and weren't concerned. This was the pattern until I was about 17.

When it was time for me to be handed over to adult services my peads doctor said he would be asking them to keep a close eye on me as he was starting to get worried about my weight etc. When I met my adult consultant, he acted like everything was fine, ignored my weight and didn't listen when I told him about the pain which was now getting worse. He put me on yearly check ups and basically told me all the hard work had been done so he only needed to check on me to ensure I wasn't loosing nutrients.

When I got that year check up, he again told me everything was fine, brushed over the pain and said the weight loss didn't matter because I "looked well". It was only because my GP had sent him about 5 letters regarding my weight that he agreed to see me after 6 months instead of the year. At that appointment, I finally got through to him and he ordered an MRI for me, 3 months later I had it, and was told I would get the result within a month, 2 months passed and I had heard nothing, and didn't have a number to call him on, so went off to uni resigned to the fact I might never know what happened.

A month into my uni course I finally got a letter telling me I needed a scope, but not explaining why. At this point things were really getting bad, I had lost a stone in a few months, couldn't eat and at times wasn't even keeping water down. I had been admitted to the hospital closest to my uni 3 times by the time he finally called me to explain, and rather than being sympathetic he got irate at me for going to the hospital. I had to quit uni shortly after. I then got an appointment through to see another gi, who told me I had Crohns and needed steroids, but I hadn't had my scope yet so it wasn't official. On the 6th of december, 20 days before my 20th birthday, I had my scope and was finally officially diagnosed.

I stayed under that first consultant for two more years, including numerous hospital stays where he didn't even come see me when asked by other doctors. He didn't even know my name when I saw him as an out patient. I wasn't put on any medication after my surgery and relapsed within about 6 months, but he kept saying it wasn't possible and I ended up in hospital for 2 weeks where I met my current IBD team. They treated me differently right from the off, even though I wasn't their patient to begin with, and I asked directly to be put on their list.

I have now been told that traces of inflammation were seen on that first follow through test, when I was 15, and although I understand them not wanting to put me through more invasive tests at that age, I think a better eye could have been kept on it. I strongly believe that if when I first got transferred they had listened to me and used an MRI sooner, I would have avoided surgery and maybe even never of had to leave uni.

[sandybeach12066 in reply to Valleysangel92]

wow I am so sorry it took so long , I am going through the same thing and have now lost my job and health insurance from being absence from work due to illness. so now I cannot have my scope done.

[FRreedman]

Hurrah, at last. I don't need to recommend Tops for Bottoms. You seem to have found a team or at least the consultant in charge who looks at you as a person, and not as another case to deal with. I have had Crohn's disease (diagnosed) since I was 11. I personally found that if i had faith in the consultant/team, they didn't treat me like an ignorant kid with a tummy ache (actual words used, at times) but told me what i needed to know, wanted to know and even sometimes things i thought i didn't want to know i felt happier. My original consultant Dr Tony Dawson RIP, was the best thing ever to happen to me. If you don't understand it ask for an explanation, If you don't like the sound of it ask for a second opinion. His words have stayed with me all these years. NOBODY can describe how YOU FEEL, better than you can, and the first time a consultant questions that, then you start questioning them. They are all trying to do their best for us but there is always someone else who may be able to do it/ explain it/or just make it feel better. Good luck with whatever decision you and your consultant agree on together. Remember it's a team game, and we're all on the same side.

[Valleysangel92 in reply to FRreedman]

Thankyou for your reply. I have the same kind of relationship with my ibd team. I can always ask them anything and get clarification if I don't understand something. They are very approachable and I know they are at the end of the phone if I need something. They always listen when I tell them something isn't right because its my body and only I know how it feels.

[willow24 Administrator]

Bless you. lets hope humira is your knight in shining armour - it certainly made my life easier. Your very lucky your GPs are so good with painkillers - mine are reluctant to even give me paracetamol!!!

The oramorph may be better taken in very small amounts every couple of hours so you get a regular amount of opain relief, IF you find say 2.5mg isn't enough every 2 hrs try 5mg every 3 hours reducing time if needed. Just remember its hard to become addicted / dependant if you need the pain killers. its when you take more than you need the probs start.

Hang in there x

[Valleysangel92 in reply to willow24]

Thankyou I don't know for certain that im getting humira yet but I am very hopeful.

My IBD nurse wrote to my GP and told them what pain meds she wanted available for me. So I have paracetamol, MST and oramorph available. With the oramorph they say I can have up to 10mg (5ml) every 4 hours, so I take 5mg (2.5ml) when needed, roughly every 3-4 hours and I find that's enough for me if I take paracetamol along side. Any less it doesn't kill the pain, any more it makes me a zombie.

The mst is slow release so if im on a bad day and need constant pain relief I can take one of those and it lasts 12 hours, but makes me feel very groggy and drugged up so I struggle to function when I've taken it so I have it very occasionally. I find I have better control with the oramorph anyway.

Thankyou, I remember one of my doctors telling me its almost impossible to get addicted if you're taking it properly.

Nicola x

[Ky--girl]

Hello this is my first time here. I am 45 and was diagnosed at 14. I have the same GI doc I have always had and I can call and his assistant gets it done fairly quickly. He sent me to Cleveland clinic because he didn't like what the gastro surgeon said and I have had five surgeries since and it started in December of 2010. I am now down to a colostomy. I am having problems I have never had before. They just recently upped my iron due to it is dangerous low levels but don't want to do infusion because Hgb is good. Well my ostomy has started producing thick stool and my belly is swelling and hard. You can run your hands across that side and feel round hard bowel. How do I fix this? I was taking miralax when I first started iron but they said not to because I get dehydrated so easily. I know it sounds stupid but do I start the miralax again or do you think it's too late? You are lucky they don't give pain meds here. It's the old saying be tougher than what it is... Some days I want to throw the towel in. Since I have complications with granuloma disease now after the biological agents I took. I was in remicade trial when it came out and it kept fistulas at a bay. After the reaction they didn't try anymore. I don't know if I should switch doctors because my doctor isn't up to speed on treatments or what. I have to continue to see the colorectal surgeon at Cleveland but it's a six hour drive we don't have a gastro doctor around here I have always had to drive two hours to see him. Has anyone else developed fibrosis in lungs, coughed up broncholiths, have granulomas on all organs? I have had a touch time over the last five years. If anyone can help please let me know.

[Terry57]

I have been on Humira since last August for crohns and I feel so much better. It took about until the 3rd injection period before I started feeling better but I'm real happy with it. It's easy to inject yourself also. I recommend taking it out of the refrigerator about 45 minutes prior to injecting because the colder it is the more it seems to sting. I have not had any side effects from it so it's working great for me. I hope you also get good results from it.

[Valleysangel92 in reply to Terry57]

Thankyou, I have heard about the stinging. Some people I know are now being sent a new formulation which is half the volume of the original and has the citric acid removed. Its the same amount of humira but less added extras and people are saying it stings a lot less. I dont know how long it will take them to roll it out everywhere but you might find you have it in your next delivery. Im on regular b12 injections and the nurses say that's more painful so hopefully I will be fine once I get the hang of it (if my consultant agrees its the right option).

I have my follow up tomorrow to discuss my options and work out a plan so I will come back after and let everyone know what's been said.

[Terry57 in reply to Valleysangel92]

Good luck tomorrow. I did my Humira injection today and it stung pretty good because I didn't let it warm up much. I do my own b12 injections also. If you do get Humira I inject in my legs, it's much less painful I think than the belly.

[Valleysangel92 in reply to Terry57]

Thankyou for the tips :). If I do get it then I'll probably be back to pick your brains a bit if that's okay?

[Terry57 in reply to Valleysangel92]

Anytime.

[Valleysangel92]

Hey everyone,

My consultant has said he doesn't want me on any Anti-TNF because of the reaction I had to Inflectra. This came as a surprise as I know a few people who have reacted to inflectra or infliximab and then been totally fine on Humira, but he felt the risk was too much, maybe mine was a particularly strong reaction or something.

So, instead, we've done bloods and I have a sample to hand in tomorrow for fecal calprotectin, as that's always been my most clear marker for my flares. My consultant is going to talk about my situation in an MDT meeting and if my tests show inflammation we are looking at Entyvio (vedolizumab).

I have mixed feelings about this, I had done a lot of research about humira and had been told it was an option if inflectra didn't work. I know it has good success rates and have spoken to many people who had thrived on it. I know its not like that for everyone, but as I felt better on inflectra, I was confident humira would help in a similar way. Entyvio is a totally different beast and one I don't know a massive amount about. From what I have read, the success rates aren't as high and the people I know who are on it have either had lots of side effects or found it hasn't made a massive difference to their symptoms. Its apparently a slow burner so takes a long time to get on top of things.

At my last inflectra, the nurses had voiced concerns over my veins as they had found cannulation very difficult and thought my veins were very weak, so they were already considering contacting my doctor and telling him they didn't think an intravenous medication was a good idea long term, so being put on another infusion medication could be an issue in itself.

My consultant has said he will be in touch when he has all the test results but that could be a while. I have a follow up appointment booked for the start of august but until then its a case of hang tight and weight.