Remicade with an open wound?

[Porkpie84]

Hello Everyone

I just wanna say how much I LOVE this forum. It is such a resourceful site that has comforted me much during the beginning of my Crohn's journey this year. Thought I'd contribute by posting something myself. Hopefully all you Crohn's boffins and brains can share your love and knowledge! I'll start by telling my story...

In May this year I started getting some severe abdominal pain in the lower right hand side of my stomach. I have always suffered with extreme bloating and have been guilty of attributing it to IBS. After two weeks of suffering with extreme abdominal pain, loss of appetite and bloating I went to A&E. They initially thought I had appendicitis and took me into the operating theatre. I remember the feeling of complete shock well. Mostly I was frustrated by the fact I'd have to cancel my holiday to Lanzarote in a weeks time! hehe Little did I know that it was the beginning of a condition that I'd have for the long haul. When I woke up I was shocked to hear that they had found an abscess and small perforation at the terminal illeum of my small bowel. They had managed to do a successful limited resection and after an 8 day stay in hospital I went home. However, it didn't end there. Unfortunately I'm sure that's a predicament that most of you guys are familiar with! hehe After 2 weeks of being home I received biopsy results that confirmed I did indeed have Crohn's disease. At the same time I noticed I was feeling worse and not better. The laproscopic cut on my belly button had become inflamed and swollen. Cue another trip to A&E where I was admitted with an infection. I had another 2 week stay in hospital in which they did an second operation to reopen the 13 cm incision across my bikini line. They treated the post surgical wound infection with IV antibiotics and dressing changes.

Now several months on I still have the open wound. It is packed by the practice nurses twice a week. It is now only 8cm long and is nearly healed. Thank goodness! It did track for quite a significant time and needless to say its been healing at an extremely slow rate. I have however had a number of infections and been slightly anaemnic. But im nearly there! Woop!

This past week I've just had my first Crohn's check-ups (MRI scan and Colonoscopy). The results of which have been a bit gutting. They did rule out a fistula which they were concerned I might have so that was good news. But, the Crohn's is already back at the point of anastomosis and is causing narrowing at my terminal illeum (he couldnt get the camera through). My GI said it 'appeared strictured'. He hasn't done any biopsies but states that he thinks the Crohn's is causing the narrowing and not scar tissue from the op itself. I did also have one ulceration there. Briefly he explained that he would most likely be putting me on Azathioprine and Remicade. The Crohns he stated was 'moderate'. I'm seeing my GI on Tuesday to finalise treatment but just wanted to get some opinions off you guys first

The only symptom I have is bloating. I go toilet regularly (2-3 times a day) and it is neither diarreah or constipated. I don't have any abdo pain and have been avoiding foods that are difficult to digest since the op (nuts, steak, pork, mushrooms, fibrous veg).
My question is this 'Is it unwise to go on remicade whilst still having the open wound??' Its nearly healed and I'm scared of risking infections and slow healing by undertaking a course of two heavy immunosupressants. Ive been on pentasa for a month already without any side effects but worry about these drugs and I just want my wound to finally heal. Im sorry for such a long post. There is much to tell after the past year! Im also puzzled as I'm not having severe symptoms like the majority of you guys, yet I supposedly have a stricture at the terminal ileum. What are your thoughts on this?

At the moment I'm planning to just go on the Aza and stick with the Pentasa. After the wound heals then maybe I'll consider the Remicade. You peeps think this is a good idea? Also, I'm extremely interested in trying dietary changes, probiotics and herbal teas that can help with Crohn's. Please share any of your wonderful wisdom

Much positivity to my fellow Crohnies Hope today is a good day!

Hope to hear back soon,

Becky x

 

[hannah-rose]

Hey Becky good to hear from you again

I'm probably not much help as my situation is quite unique but I'm on Inflix now with an open wound and so far the only side effect has been healing! I received a booklet in the post pre-Inflix and as far as I can remember side effects were listed in three categories: common, uncommon, and rare, and 'impaired wound healing' is listed under uncommon, so it's not definite that having Infliximab would have any effect on your wound healing at all, it's just an 'uncommon' side effect.

I'd ask your consultant, he/she will be able to tell you whether this drug will have any effect on your surgical wound (ps so sorry to hear you're still not healed, that sucks). Unlike 6MP or low-dose chemo drugs Infliximab only knocks out a certain part of your immune system, being an anti-TNF blocker, so it doesnt exactly give you a lower immune system.

For example, you don't necessarily get every cold that's going just because you're on Inflix, and if you get the flu, you're not going to die, but you could die if you had tuberculosis.

Having said all that I don't really know anything about the effects of Azathioprine so this is probably not that helpful! All I know is I have a very knowledgeable consultant that I approached with pretty much identical questions before I begun treatment and I'm really only passing on what he told me (and what I've read in the patient information leaflet).

Re. your surgical wound, have you been seeing a specialist wound care nurse? I was seeing a tissue viability nurse (still am) who specialises in healing wounds and she's tried out loads of dressings and creams and stuff all designed to encourage wound healing. I don't bother now as it's become clear my butt wound (yummy) is due to Crohn's inflammation, but if your wound is not healing I would maybe ask about it.

The type of specialist advice you can expect to receive is to take salt baths, let air get to the wound, take zinc supplements and eat lots of chicken!

Happy healing xxx

 

[Porkpie84]

Hello Hannah,

Lovely to hear from you again also And ta very much for the informative reply

Its so tricky this whole medicine thing. I really find it difficult as Im not comfortable with the possibility of any side effects. Guess I have no choice though and just need to get used to the fact I have Crohn's and it needs treating. Apart from the scary side effects this Remicade appears to have a fab reputation for increasing remission. So happy to hear that its having the desired effect for you. Its about time you had some good luck hunny Question for you though, Did your gastro discuss the fact that Remicade could stop being effective after a few doses? Im only just getting clued up on the drug info but I think ive read that the combo of remicade and azaithoprine can increase the chances of it staying effective. Might be wrong though. Does this sound familiar at all? Let me know if you have any good advice on the matter. I guess I'm just puzzled why I need to go on two straight away. Im already on Pentasa and at the moment (touch wood hehe) I'm not having any troublesome symptoms. Just the bloating Id rather take as little medicine as possible

How did the actual administration of Remicade go? Did it take several hours? Will you be having it every 8 weeks? Oh and btw, have you got your official diagnosis yet? Bet you'll be glad to finally get answers.

Yeah I have seen a tissue viability nurse and she was helpful as she changed my dressing to sorbsan silver ribbon. That has sped up the healing since it must have had dormant bacteria in the wound. I got the dressing changed today and its hardly exuding anymore. The nurse told me its shorter in length yet again and looks like its very close to healing. Think having active Crohns and mild aneamia has majorly slowed down the whole healing process though.

One last question me dears, was you offered Humira? I know the two drugs are derived from different proteins but is one supposedly more effective than the other?

Im seeing my GI tomorrow and hope to formalise a plan Knowledge is power and all that jazz! Thanks for all your help

Happy healing too

xx

 

[hannah-rose]

No it's not nice to think about side effects, I personally have freaked myself out lots of times by over-googling medicines and also reading this forum too much! You google anything enough and you'll find some statistic or report of someone who's died or got cancer or something.

And therein lies the problem!

This might cheer you up - today I had my second infusion of Infliximab and I've had NO side effects except that I feel better and I'm FINALLY healing!

Assuming you trust your consultant then your'e basically going to do as he suggests - I had loads of questions for my consultant when he suggested Infliximab and he was able to answer all of them, the last question I asked was:

'What would you do if you were in my position?'

And he said he would have Infliximab.

And because I trust him and I balanced that trust with my own knowledge of the drug, I decided to have it.

I did ask my Consultant about the possibility of Inflix become ineffective and he said yes it is a possibility at some point for anybody who takes it, but, correct me if I'm wrong someone, some people take it for years and it continues to work for them, so again it's not something that you'll know unless you start taking it. I'm taking just Infliximab, no other medication, because my symptoms are very specific and my Consultant believes this is the best treatment plan for me.

I can totally understand that you feel like you don't understand why you should be taking such 'strong' drugs when your Crohn's isn't causing you much discomfort at the moment, but there must be a good reason your doc is suggesting the drugs you've mentioned so if I were you I'd ask him about it, I would straight out say 'I feel alright, why do you want me on these drugs?' If he's like my doctor, he won't flinch and he'll just tell you directly why he's decided that's the best treatment plan for you.

My infusions have been fine so far, the initial plan for me was to have the three loading doses of Inflix - one infusion, two weeks later another infusion, four weeks later another infusion. That is the loading dose then after that you go to every eight weeks, but I may only have three as that is apparently the usual dose for perianal disease, but it depends on how well I heal, he might want to continue or try another drug as well, I'm not sure yet.

The actual infusions are fine, I go in, have a pee test to check you're not up the duff (I did say to the nurse if I was it'd be by immaculate conception and it'd be a miracle haha) pop your canular in then hook you up to the IV and it's given over two hours where they take your obs every half hour. When the infusions over you have to stay for obs for another two hours, then you go home. It's quite boring actually! But they do bring round lunch and I take someone with me to go get snacks and stuff if I get bored. It doesn't hurt and as I said I've had no side effects. Oh and I'll probably get my official diagnosis on 8th Nov when I go for my follow up appointment

Ah sorbsan I used that back in the day I haven't seen my tissue viability nurse for a while I'm going to make an appointment in a week when I hope more healing has taken place and surprise her 'Ta daaaah! Look at my bum Denise! It's magic!'

Re. the Humira, I asked about that too (I asked a LOT of questions to my doctor), he said that whilst it was certainly a viable treatment option for many cases of Crohn's, my best bet was Infliximab. So yeah, he went with that.

I think I would say the moral of the story is that the only real way to get answers is to ask your own Consultant and if you don't trust/like him then get a new one. There's so much information on the internet about drugs and treatments etc. but only your Consultant will be able to work out the right treatment plan for you, and if he's suggested a certain combination of drugs it's probably because it's got the best chance of making and keeping you well.

Write down ALL the questions you can think of, however ridiculous they may sound (for example, I asked my dr, 'why are you diagnosing me with crohn's and not ulcerative colitis?) And I hope you'll find that when you've had all your questions answered by him you'll feel a lot more confident about the treatment.

I'm sorry that was VERY long winded lol but I hope you manage to read this before tomorrow and I hope your appointment goes well and I hope you feel better soon!!

xxx

 

[Porkpie84]

Hello Hannah,

So so sorry for this late reply. The past few days have been a abit mental and Ive found myself absorbed in deep conversations with family members regarding my health. Im sure you can relate! Making these big decisions and all that Jazz I just want to say that I did manage to read your message before seeing my consultant and it REALLY helped. So thanks a bunch for that sweetpea. I'll give you a quick recap of how it went....

I did just as you advised and wrote down any questions I had and made sure I asked them my consultant. Just as you suspected he was able to confidently explain why he wanted me to pursue this course of treatment. I really like my consultant and IBD nurse (who was also there) and felt much better after speaking in length to them both

My GI explained the reason why he wanted me to go on both drugs. He said that even though I am lucky enough not to currently have symptomatic Crohn's (apart from bloating with I have frequently) that he highly suspects this wont be the case for much longer. He explained that the combination of both drugs will quickly blast my moderate Crohn's disease whereas Azathioprine alone will take much longer to have a positive effect. He explained that he favours the top down approach and prefers aggressive treatment first and tapering down next. He doesnt want it to get any worse than it already has. I know there are risks involved with taking both drugs but after a long indepth discussion I decided that everyday life involves risks and that this one was worth taking. The area around my terminal ileum is quite inflamed and I just wanna get this under control. Already had two surgeries this year and dont fancy another! So there you go, Im taking Azathioprine (started on Wednesday) and my first dose of Remicade is scheduled for the 23rd of November. Like you I may just recieve the loading doses but thats a decision they will make further down the line. So I'll keep you posted I am nervous but know I'm most likely doing the sensible thing. It made me feel better when I spoke to the IBD nurse after my appointment and she said that if I was her daughter (she has one the same age) she would want her to do the same thing. Reassurance like that really helps since this is all new to me and she sees people with Crohn's disease everyday.

As you know I am worried about my wound healing whilst on the meds but I spoke about this and my consultant doesnt think it will be an issue. The IBD nurse also gave me another perspective that put my mind at ease. She said that if we dont get the active Crohn's under control then this will significantly impact on the wound healing anyway. So guess I'm doing the right thing for me. Sure you'll agree that it isnt easy saying yes to a med like this though. But once you've done it you feel instantly better I guess You, and other people on this wonderful forum, are living proof of how the biologics can be a miracle worker. Keep your fingers crossed that I respond as wonderfully as you also!

Have you booked an appointment with Denise yet? I'm sure she will do a victory dance when she sneaks a peek at the wound hehe Has it been improving more since we last spoke? Hope so!

Keep in touch buddy. You really keep me positive and focused. Thank you for all your wonderful messages! Hopefully one day we can meet for a coffee or something. Hopefully it'll be to celebrate remission and the absence of these wounds that have plagued us for tooooo long!

Hugs

xxx

 

[hannah-rose]

Becky I'm so glad everything's ok!

I'm glad my message was helpful to you and you managed to read it before you saw your doc. I'm also glad your doc sounds like a good one and that he could answer your qs and that you trust him, speaking as someone who's had both a terrible doctor and a brilliant doctor it really makes all the difference! I don't have a IBD nurse (yet) although I do have a butt nurse (colorectal nurse) who comes to see me during my infusions, although she doesn't do much and is the only medical professional I know hasnt actually seen my butt which is ironic lol.

I know what you mean about getting bloated, it's no fun and makes you feel so gross and uncomfortable. Hopefully that'll go away soon, could get some Rennie in the mean time?

I asked my doc about Azathioprine and he said the same he said we could try it but it could take several months to even begin working and for my symptom there was no guarantee it would work on its own. I dont know if he'll suggest it next Tuesday though but I'm glad I've gone on Inflix for the mean time. I really hope that the combination of drugs suggested by your doc will prevent you developing any more symptoms and you can get on and lead a normal life.

I think my doc also favours the top down approach, although i had to use topical steroids first to be able to apply for Inflix because its expensive and you have to show you've used conventional treatments and they havent worked. and yep you definitely dont want any more surgery! It's also good to hear that your nurse recommended it too, that kindve personal touch really makes you feel like your making the right decisions.

It's kinda weird really cos of all the fear of biologics, yet I literally feel no different after my infusions..... well i feel better obviously but for such a scary drug i feel no negative effects at all. When I had my second one i went out for celebratory maccy ds You'll feel much more relaxed and confident after youve had your first one. I feel sooo much better just knowing there's nothing to be scared of now. I get to take a day off work and catch up on my DVD watching for a few hours whilst nurses bring me tea and toast!

I've not booked to see the lovely Denise yet lol although I'm hoping she is pleased with my progress! Progress seems slower but steady now and still a massive change to before I had the treatment.

Aww thanks you keep me positive too its nice to have someone who you really feel you can relate to I mean I know everyones in the 'same boat' but were both from the UK, both girls similar age both have quite sudden illness come on and its good to have someone to relate to like that.

Yeah if you're ever in the area give me a bell we'll meet up! And here's to happy healing!

xxxx

 

[SarahAnne]

Hannah - I'm so happy the Remicade is working for you! You have been through so much, I'm so glad you're finally getting some relief, and with no side effects! I hate to hear all the stories from people who have bad reactions to the Remicade, because like you, I have never had any bad side effects (excluding the reaction when the lab forgot the pre-meds). I always feel so much better, especially the next day. Like I just have more energy or something.

Becky - I agree with your doctor about treating the disease more aggressively at first. I was diagnosed in 1996, and had surgery less than 6 months later because my disease was so severe and wouldn't respond to any medication. After the surgery, the doctors I had weren't very proactive about educating me and I was young, so I kind of pretended everything was fine since I had surgery. I didn't take maintenance meds for a long time. I've just had my second bowel resection after a very major 3 year long flare up. I had to have even more bowel removed, so much that he actually measured what was left.

Basically, I have 130cm of small bowel left. He told me having less than 100cm would require me to have some type of IV nutrition or supplementation at least once a week for the rest of my life, as it isn't enough bowel for absorption. That scared me, as I'm not even 35 yet, and this disease has a nasty habit of coming back over and over.

It sounds like you have some very smart, proactive doctors! Good luck with your treatment, I hope you get the Crohn's under control and the Remicade works wonders for you!

 

[hannah-rose]

Thanks Sarah I invite everyone to share in my joy!

So far Remicade has done lots for me, I even drew a little diagram so you can see what it's done so far!

I don't know if on its own it will be enough to heal me completely but it's good to know that something does work and there's lots of combinations of treatments to try so I feel positive at the moment

I felt fantastic after my first dose of Remicade and all my digestive troubles stopped and healing was quick, however since I had my second on Monday my digestive troubles are still bugging me a bit, but I'm going to discuss it with my Consultant in a couple of days. I suppose Pentasa might help as my digestive discomfort is mild, and I've still never taken steroids and I could also take Azathiprine so I'm confident that eventually the correct combination of treatments will make me well.

I only ever have discomfort in my descending colon:

And it's usually bloating or urgency or stomach grumbling or a bit of pain.

It's hard sometimes because I look so well to explain to friends. For example, this weekend I stayed with a friend and I found it hard to convey to her that eating the amount of food she usually does (she can eat a LOT) makes me feel horrible and full and bloated and gross, and then my stomach's gurgling all night. Then this morning I had to go to the bathroom and it was fine, but then on the train back I kept experiencing quite uncomfortable urgency, but I find it hard to be like 'I need to go I feel like I'm gna crap myself!' I usually only say those type of things to really close friends and family.

But hey ho, I know it could be a LOT worse, in fact I've already been through the hellish part earlier this year so I'm very glad to have such a good quality of life at the moment. I just hope that Remicade keeps working and once I've had my third loading dose it keeps doing its healing magic

And Sarah I hope it keeps working for you too and you don't need any more surgery!!

Hannah

 

[Porkpie84]

Thank you both being so supportive and answering my questions. I'm really sorry for the late reply. I find myself sometime getting lazy and lacking the energy to even type! haha Think the massive break from employment has killed off my motivation. I'll get it back eventually

Sarah-Anne - I'm so sorry to hear that you've had so many problems with Crohn's already. It really is a strange disease that keeps testing its sufferers patience. It's wonderful to think that you too have faith in my doctors treatment approach. All it takes sometime is for someone else to reassure you that your making the best decisions you can in your situation. It really helps Has Remicade given you remission yet? If not I really hope you get there soon. You certainly deserve it

Hannah - I'm VERY impressed with your artistic skills there. I feel even Neil Buchanan would feel threatened by such creations! I can hardly type on a computer - let alone draw! haha Im soooo happy that your finally getting some relief. You really have had a hellish time lately. The extent of your suffering really hit home when I read your blog. You've had so much health aggro for a 23 year old girl. I'm 27 and even I feel young to be having problems. Something tells me that your gonna get everything you want and more though. 2012 WILL be a good non-perennial ulcer year I'm sure. Hopefully you'll get a concrete diagnosis soon.

Completely know what you mean when you say that your friends dont understand the intricacies of your health problems. Since I've been told I have a possible stricture I've been chewing my food like theres no tomorrow. Funnily though, the result is that whoever cooked me the culinary delight thinks I'm not enjoying it! I look quite sour faced and bored when I eat food slow apparently. Its very funny! haha I'm constantly explaining myself Crohn's eh!

I really cannot believe the improvement since you started Remicade. Its amazing! So different in such a short time. When do you get your next infusion? Also, do you know whether you'll be going on the maintenence doses also?

Healing hugs to you both

Becky x