Tummy Troubles

This is the update on D and the ongoing saga of his Crohns disease. Last time I mentioned it, he was getting a lot of pain and losing weight rapidly. It took several visits to the consultant with nothing much happening before they decided to refer him back to London and UCH. Last April (2010) while we were still waiting to hear from UCH, D was admitted to Medway hospital suffering from severe malnutrition. After a few false starts, (during one of which they managed to puncture his lung!!) he had a tube inserted into his chest and started to be fed through that. They also finally got his pain sorted out and he was put onto something that actually worked. He was in Medway for three months before being admitted to UCH London at the end of July. He stayed in UCH for another month and then finally came home. The tube was removed and he started a mission to gain weight.
The scans and tests he had showed that most of his small bowel was inflamed or scarred and there really isn't anything they can do about it. He can't have surgery as too much bowel is involved. The only hope was medication. Since the Infliximab had stopped working they decided to have a go with Humira. This is a self inject medication, so D had to learn to do the injections before they let him come home.
It was incredibly strange having him in hospital for four months. I ended up off work with stress, the travelling for visiting was awful and the kids were obviously very worried too. It was a tremendous strain for all of us. The only thing that kept me going was support from my family and friends. They were all wonderful. The Posh group on Ravelry even got together and made us the most wonderful care package including a mindblowing blanket made with loads of squares from everyone. It was overwhelming but in a totally fantastic way.
The one positive thing that came out of the long hospital stay was that D and I found that our relationship was completely reborn. It seems that over the years we had stopped talking and fallen into a huge rut. Both of us were having doubts about the relationship but we didn't realise how the other person felt. With him in hospital it was a forced separation, but we still saw each other pretty much every day. At visiting time there is nothing to do but talk, and we started really talking. It got to the point where it felt like we were almost dating again and I couldn't wait to go and see him. Over those four months we fell in love all over again, and when D was home he suggested we renew our wedding vows. Since 21st May 2011 was our 17th anniversay and fell on a Saturday we booked the registry office and started making plans. More about that in another post.
Christmas came and went and D managed to gain some weight, he was still incredibly thin but very slowly getting there. Unfortunately by March his pain levels were back up and he had a lump under his belly button. MRI scans showed it was a fistula and that his bowels were no better on the Humira. Over the next few weeks the lump got bigger and eventually at the beginning of May he was admitted to Maidstone hospital. They were very reluctant to do anything as the fistula was attached to the bowel and operating could cause more problems. Once again we waited for UCH to take over. After a week in hospital the lump got so big and so painful that they were forced to operate before it ruptured. After the op the pain stopped immediately but he was left with a stoma bag. Luckily he was released from hospital the week before the renewal and that all went ahead as planned.
So there you have a very condensed version of the last 18 months. its been a rollercoaster of emotions, from fearing we were going to lose him to celebrating a renewed relationship. At the moment he is feeling not too bad, the pain levels are manageable, he is getting used to the stoma bag and still trying to gain weight. As far as treatment goes he is still on the Humira, but it doesn't look as though its working terribly well. He is also now seeing Dr Lindsay at St Barts hospital to see if he is eligible to take part in a trial treatment. This is a stem cell transplant that, if it works, could cure the Crohns. It sounds very scary but the outcome could be fantastic. Only a handful of people have had it so far and if D is accepted on this trial then he will be one of 30 in Europe to have it.

Gosh, that was a long post. I did try to keep to just the important bits and if anyone has made it this far then well done. You will be rewarded with a happier and picture filled post next time, when I will tell you all about our renewal.