HUMIRA

Hi all - I wrote on here a few weeks ago as had been worried sick about my son. He had severe blockages, had been vomiting daily for months and had severe weight loss. He has had a 2nd major operation 2 days ago to remove the blockages and it was discovered he had further extensive damage. He now has only approximately 1.5 M of healthy small bowel left but the surgeon says she has removed all the diseased areas and preserving this section was very tricky and complicated, he had a lot of blood loss and she also said she had no idea how he had managed living like he was considering the damage. He has not been able to keep any food down at all since the beginning of April and he was finally fed through a TPN around 10 days ago.

Around 6 weeks ago they started him on Humira for which they normally have to get funding for, but started him on it anyway as he was so ill and as they were hoping this may avoid an operation. As he was in such a bad way it's difficult to know whether it had any effect and I'm now worried that he will be taken off this drug. After he had his first operation, it was nearly a year before he was given any Crohns medication and I'm finding this very difficult to understand as it is very obvious that his condition has deteriorated by a huge extent as was seen 2 days ago and I feel that this further damage may have been prevented had he been given the correct medication after the first operation.

His operation (fingers crossed) has been very successful, he is still in critical care as he has had a problem with his blood pressure and they are watching for any sign of infection. He has a stoma (he has called it Patrick!) which they have said they will hopefully reverse in 3 to 6 months. The TPN feed has made a huge difference, but once again I am confused why this was not done weeks ago. He is relieved it's over and I can see a huge difference in him already. I cannot fault the surgeon and the nursing staff, the care they are giving him is superb but am worried that now he has had the operation they will stop giving him the Humira because of the cost and he won't be able to stay in remission and will lose even more of his bowel.

Would appreciate your input on how you have got on with Humira and if it has helped with your CD as I have heard good things about it and want him to have the best treatment available. One of the problems at our hospital is that there are so many different people and departments dealing with my son. His notes went astray for 3 days delaying his TPN treatment, different consultants tell him different things and there seems to be little co-ordination between them, so although I know the surgeon wants to hit him with everything available now, her job is done and his further treatment will be dealt with by someone else. All very frustrating.

Am so relieved he has got through his operation and hopefully he will have better days to look forward to.

Hi - thanks for your reply - below are the treatments he has received up until recent op

Was diagnosed with Crohns Disease in July 2013 after suffering 10 years plus of bouts of agonising pain

Had an operation on 22nd July 2013. This operation confirmed a diagnosis of Crohns enteritis and was a small bowel resection.

30/01/14 in hospital to treat Crohn's flare up. Treated with Prednisolone 40mg per day decreasing 5mg each week

June 2014 started Crohns treatment Azathioprine 175mg once per day

September 2014 Crohns treatment Azathioprine increased to 200mg once per day

Early April 2015 admitted to hospital (6 days) for suspected small bowel partial blockage. Treated with steroids (Hydrocortisone on IV and then Prednisolone tablets 40mg after).

Late May 2015 admitted to hospital (10 days) for suspected small bowel blockage. Treated with steroids (Hydrocortisone on IV and Prednisolone tablets 40mg). Adcal d3 calcium tablets two per day. Started course of Adalimumab (Humira) 160ml loading dose and 2 weekly jabs until operation.

Back in hospital a week later and been there since then.

Although he was given steroids he did not receive Crohns treatment Azathioprine 175mg once per day
for a nearly a year after first operation. I'm not an expert but perhaps if he had been given something earlier, he would not have ended up in the critical state he was as surely it may have kept him in remission unless that was what the steroids were for?

I will be asking a lot of questions now as I'm not happy about the fact that in all the previous 10 years, not one doctor suggested he might have CD, and although he had many tests and was having regular bouts of terrible vomiting and pain no-one ever looked at his small bowel, and I believe they thought it all in his head as he used to become very depressed when he had these episodes. I only wish I had known what I know now as I knew nothing about CD, but the doctors should have. I have no idea how he managed to drag himself out to work every day and cope with his life at all but he did and we'll now do everything we can to make sure he gets the best treatments.

I also hope your daughter is doing well, she is so young and we can only hope that one day they can find a cure for this terrible disease. So hard seeing them suffer any pain and feeling helpless.

Many thanks for your help, it seems that is vital to educate yourself and to make sure everyone is working together. I have been trusting in the consultants but there seem to be 5 or 6 different ones both gastric and surgical but feel there has been some lack of communication between them.

The young woman who has carried out his operation this time has been wonderful and explained everything so thoroughly. She is so pleased with the outcome and how he is doing. I am so grateful to her for managing to preserve some of his bowel, although it was a very complicated operation and meant more joining up. This will give him a much better quality of life.

He has already had a little food via mouth, has not been sick and it's been absorbed. What a joy!

Thank you so much for your kind words and I'm so pleased your son is doing well. I am worried that the Humira will be withdrawn because of the funding issues but will fight to get him kept on it.

Your words "the sun would shine again some day soon for him" have brought tears to my eyes as that is all I want for him.

The surgeon is amazed at how well he is doing in so short a time and so am I. He is now out of bed and ate a meal yesterday!

I wish you all well and am so glad I found this site as I don't feel so alone

Thank you so much for your response, 2 weeks ago we were very scared that we were going to lose him and to see him so much better since his op on Tuesday is amazing. The mental strain has been overwhelming at times and has gone on so long. Just for you to tell me he may enjoy many years remission has made my day as my fears have been that he will never have a pain free normal life.

He had cancer when he was 13 years old and he recovered from this and never complained once, just got on with it. At times I have felt that I have must have done some terrible thing and I'm being punished for it through my son. Illogical and silly I know, but that's how I've felt.

Have done a lot of crying since Tuesday especially when I come on here, but it's been good for me as I've been scared to let go in case I break down completely and I would have been no use to him at all.

Your messages of support mean a great deal, that you all so much.

Hi Dingleeire

Am in UK so under NHS and the doctors have to get funding for some drugs. A funny system as if you live in one area you may get it, but in another you may not.
Prior to his operation last Tuesday, he had been given Humira around 6 weeks ago and was part of a programme going on to see how it worked with severe strictures/inflammation.

As he has now had surgery, he won't be on this programme any longer and therefore the Humira may be withdrawn. If they refuse it I'm going to kick up a stink as I'm feeling very angry that he was not given any CD medication for nearly a year after his first operation as this may have avoided his CD from getting so much worse and losing so much bowel.

I have no idea why they left him un-medicated for so long but will be asking a lot of questions. There may be a very good reason and if there is they can tell us why, but I'm starting to feel it may simply be due to the lack of co-ordination between departments. After his first operation, he had one follow up appointment with his previous surgeon which I thought was strange? Other than that he has admitted himself to hospital on many occasions when he has been extremely ill, and twice he was septic with all his organs shutting down and needing very urgent help. I only wish I had found this site before. On these occasions he has received excellent treatment from the hospital staff but there seems to have been little follow up.

He is doing well apart from his blood pressure struggling to return to normal. He was a bit down yesterday and very pale and tired which is not surprising considering the big op he has just had. He has now been moved to a general ward out of critical care, so will be keeping a very close eye on him.

Many, many thanks for your kind responses.

Hi Nora - he had a terrible night as accident with stoma and no-one on duty who could help re-fit it properly for him so spent the night laying in a mess. Just not good enough!!! and very upsetting for him. I'm sure its not good for his other wound to be exposed like this. Will be having something to say when I visit later. His treatment in critical care unit was fantastic but I'm not happy about this at all. Weekends are not good in UK hospitals at any time as patients left in care of junior doctors on many occasions and we have a terrible shortage of skilled UK nurses so a lot of agency staff are employed who just come and go, but surely there should be a nurse available who can re-fit a bag? Unbelievable and very humiliating for him in a ward full of other people.

They got in the stoma nurse this morning and have sorted it so he's feeling happier now. I suppose it takes a bit of getting used to but am really hoping that he does not have to cope with many accidents on top of everything else. Hopefully surgeon can reverse it in 3 to 6 months when everything healed.

Thanks Nora

Hi Nora - I went in last night and spoke to them about it. I got lots of apologies. I also told them I was concerned about infection with him being in a ward with others at the moment. They are going to move him to a side room asap.

His TPN tube also came out that night after he had told them several times the stitch holding it in place had come out. He was then told they would not be putting it back in as he could eat. Yesterday, the doctors got together and said that they would be putting it back in as they were not happy with his weight and any food he was eating was going straight through him and he was probably not absorbing enough. The person I spoke to last night confirmed that yes he was definitely having it put back in today. This morning they told him again that no he did not need to have it in. So confusing. They have given him something to slow down the output into the bag but he is losing weight again.

His consultant also told him this morning that he would not be getting the Humira again as he does not fit the criteria any more as he does not have Crohn's at the moment! I thought the whole point was that he does not want to have any more flare ups if at all possible. He will continue with the other drug but after giving him nothing for 11 months after the first operation, the other drug does not appear to have kept anything at bay or he would not have got into the position he was prior to the second op.

The excellent surgeon who did his operation said she now wanted to hit him straight away with everything available to try and keep him from any further damage. She is on holiday until next week and I'm sure she will not be happy about any of this. None of it makes any sense and I think it's down to money. We are going to make an appointment and will need some answers. What point her doing this complicated but successful operation if there is no proper aftercare. She has managed to save a small length of healthy bowel and surely this should not be put at risk?

I know that it will take time for him to recover, he's doing well at the moment and we want to make sure he stays well. If they refuse to give him the best treatment because of money, we'll make as much noise as possible and will go as high as possible to make sure he gets it. They spend enough here giving gastric band surgery to people who eat too much but won't fund something like this? I won't let this go.
Am very angry about all this.

Sorry so miserable Nora, will feel better when have spoken to all involved.

You take care too - Christina

Hi Nora - well he has a little infection at the site of his wound and is having antibiotics for it.
The thing I'm most worried about at the moment is his weight, he's down to 8.25 stone from over 10 stone pre-op. He is eating very well but is not putting on weight as it's going through his system too quickly and they are trying all sorts of things to slow it down. The bag is constantly filling up and needing to be emptied, and I'm hoping this will settle otherwise I'm not sure how he'll be able to go out and about without a constant fear of leaking. The doctors have now restricted his fluid intake by half and given him loperamide to try to keep the food in longer so more is absorbed.

He is not having the TPN at the moment but seems to be wasting away in front of my eyes despite eating a lot of food. Am hoping they can get the balance right soon.

With regard to the Humira, he was told the other day that he did not need it as they had cut the Crohn's out. However, after being questioned about this, the consultant is going to try and get the funding for it, so I'm pretty sure it's about the money. Have done a lot of research on Humira and the importance of using it early on in order to prevent a flare up. I'm going to arrange an appointment to see this consultant as we are getting very contradictory stories and the surgeon was quite clear about hitting it straight away to prevent more damage.. You are right that the other med did not keep it under control but maybe after 11 months with nothing it was all too late and the damage was irreversible.

Apart from this, he has no pain when he eats, he has lost his hugely bloated tummy, and apart from feeling weak and bored he's in quite good spirits.

Thank you so much for taking the trouble to talk to me - it means a lot

Christina

Wow. What a horrible ordeal your son is going through! My CD is not nearly this severe, but I have gone for 10-15 years before being diagnosed as well. I am about to start Humira. I'm only waiting for insurance prior authorization. The doctors are all over the place on this. The first doctor to determine that I had CD or even bring it up was my rheumatologist. I started with a GI after that who only wanted to put me on very expensive drugs! Pentasa which did nothing, then Entecort which was $1250/mo! Just ridiculous. Neither of those lasted long as I couldn't tell if they were helping. My rheumatologist is putting me on the Humira for RA and CD and gave me a co-pay card that he said will make it $5/mo.

I hope you are able to get your son back on Humira if it is working for him! Best wishes and God bless.

Hi Christina,

Glad to hear your son is getting stronger. There is a forum for Ostomies where I am sure you could post and get some good advice about his stoma, fortunately my son didn't have to have one after his surgery.

I pray for your son everyday and hope that he gets to go home soon. Take Care of yourself too it is so stressful and exhausting you guys have been through so much and are having such a long hospital stay.

God is answering his prayers and he will be with him all the way during this battle.

Nora

Hi everyone - have not been on lately but thought would give you an update.
Anyone who has read my posts will know how stressed out and hopeless I had been feeling. My son was transferred to Addenbrookes hospital who have a more specialist unit and to prepare him to go home with all the support he needs with regard to his TPN feeding and fluids. He finally went home 2 weeks ago!

The change in him is unbelievable! He's now starting to absorb his food himself and hopefully they will be able to decrease the amount given through TPN although he will have to have his fluids through IV until his reversal op. The surgeon explained that while his remaining small bowel is re-routed he should not have a Crohns flare up so once his has his operation she will be watching him very closely and hitting him with everything available to try to keep him well. She says he is a very high risk case and before joining him up she will do microscopic tests to make sure there is absolutely no signs of Crohns. She is just wonderful and she has done her very best for him and I feel he's in safe hands now. I still think that somehow he got lost in the system from his first op 2 years ago and had that not happened he would not have got into the life threatening situation she found him in, but am just so thankful to see him happy and feeling better than he has for many years and living his life to the full. At the moment his life is full of the "sunny days" that I was scared would never happen. I can't tell you how much your support has meant to me through the dark days when I was at rock bottom.

I hope that if anyone reads this in the same situation, it will give some encouragement and hope that things can get better. Thank you all so much - Christina

Many thanks for your good wishes! I send mine to you