Living with Crohns Disease

I have started to write this post on more than a few occasions, but to be honest I’ve not really been too sure what to say. It’s a long one, bear with me.

My husband J has Crohns Disease. He was diagnosed on the 31st December 1999. He was taken into hospital with a suspected appendicitis, but when they operated to remove his appendix they found some Crohns in his intestine. This was the start of a few years back and forth to hospital for several operations. We were both young then, only 19 at the time of diagnosis, and hadn’t long been together. I cant really remember what I thought about it all, or how I felt about my boyfriend being unwell and being in and out of hospital. I guess over the years it became the norm for us, J was on permanent medication and whilst having to avoid some foods when J was feeling well life was pretty good. So much so that after a few years of doing very well, he completely came off his medication.

One thing that I have struggled with in times when J has not been doing so good, is really feeling like I have missed out. I know that this is selfish, it’s hard to put into words, but if I had been looking forward to an evening out with friends, or we were to have a nice dinner, those plans would sometimes get put on hold, and that was difficult to deal with, especially when it happened very regularly. I didn’t understand why we needed to be going through this, and to add to to it J was very uncomfortable, in a lot of pain, more than I think I ever realised, he just became good at not talking about it. (After all, talking about pain when you always have it, is not really a hot topic of conversation! Even with the people you love).

Fast forward to 2011. After I had BB in 2011, J didn’t seem himself, we put it down to the tiredness and stress of being new parents. We had also just moved house, and BB was only 8 weeks old. J was having some stomach pain, he knew that he wasn’t feeling right, and was struggling physically. I wasn’t the most understanding especially as I felt I needed J’s help with our newborn. Throughout our first year of being new parents, J would often come home from work complaining of pain and foods that he was eating were causing him pain and discomfort. It was really hard, I felt like nothing I could do helped. The food I made was no good, even things that would normally be fine, low fibre food easy going on the gut were not helping. J saw his specialist at a routine appointment and was scheduled for an MRI scan which revealed that he had strictures in his bowel which needed to be removed. Keyhole surgery was the best option and the wheels were put in motion for scheduled surgery in November 2012.

Unfortunately this wasn’t meant to be, J’s crohns was take us down a different pathway.

On the 10th October 2012, J was at work when he collapsed. He was due to start teaching an evening class. A couple of students found him and an ambulance was called. I was home giving BB a bath, with my phone on silent I had no idea what was happening. My SIL who was coming over for the evening anyway, had been contacted. When she arrived she told me what was happening, though I just thought the students were being over cautious, that people didn’t really understand, and that J would be fine. I had experience of what J was like when he needed medical help and how this could manifest itself, so I was fairly calm, though I think somewhere in the back of my mind, something seemed different this time.

I was in a daze really, and rushed off to the hospital leaving BB with my SIL. I arrived before J, followed by his parents, before he arrived. He was taken straight to the Resuscitation Room. He was in incredible pain, needing morphine every 5 minutes or so. It’s quite a blur to me now, but I was on autopilot and just did what I thought was needed. I spoke to and text a lot of family, and friends. I asked for J to be put on our church prayer chain, and I asked friends from other churches to pray and ask others to as well. J had an X-Ray and it was discovered that his bowel had perforated. He needed emergency surgery.

Ironically I had just gone back to work after my maternity leave had finished 2 days earlier, but I knew I would be needing some more time off. My boss was extremely understanding and let me take as much time as I needed. Thank you God for great bosses!

J was in surgery for around 6/7 hours. I had gone up to the theatre with him, as far as I could. I kissed him and told him I loved him, and said I would see him later. J had, had a few surgeries in the past so naively perhaps this seemed routine to me in some strange way. I had no idea of the severity of his condition and what it could mean, but I knew I would see him later. When J came out of theatre, the anaesthetist came to speak to me and J’s Dad. She told us he was extremely poorly, he was to remain in intensive care, and would need 1:1 monitoring. When I saw him, he was hooked up to lots of machines with tubes and wires coming out. It was distressing and harder still to have to talk to family and friends and tell them what was happening. I felt completely overwhelmed, and yet at the same time God was giving me this amazing sense of peace and faithfulness, like I had never known. I felt strong, but this wasn’t my strength, there was no way I could be in control of this.

That first evening, well actually morning I came home after the surgery, I pretty much went straight to my room to rest. My parents and J’s parents and sister were at our house, helping to look after BB, and I think needing to get their heads around the situation. I didn’t really want to talk to them, I was done with talking at that moment. I cried for a while, listening to our family talking downstairs. I was overwhelmed, angry, tired, and could not think straight. I wanted to vent and needed to let people know what was happening, so took to Facebook to write an update. This was to become quite cathartic to me over the coming weeks, as I would post a daily update of J’s progress so that I didn’t need to keep telling everyone. The response was amazing. Love, kindness, and support poured out gloriously. Meals prepared, Prayer meetings arranged, just wonderful family and friends.

Some friends asked what they could do to help, our response was come to church. This was the first Sunday after the operation. Church was amazing that morning. People that wouldn’t normally come, were there. People prayed and worshipped, and I felt Gods spirit overwhelmingly.

J stayed in intensive care for 3 weeks, 2 of which he was in a medically induced coma. He was up and down, machines were breathing for him, and every now and then they would try to reduce this to enable him to breathe by himself and get his lungs working strongly again. J would hallucinate due to all the medication he was on, this could be quite upsetting, and it sometimes felt like he didn’t want me around. I later found out that those times when J had seemingly pushed me away, were because the hallucinations were so vivid that he felt like he needed to save me from things that he was seeing. We have sinced laughed at some of the hallucinations, and others were truly horrific. It’s amazing what drugs can do to your mind.

During this time his improvement was like a roller coaster. He was extremely septic, his kidneys, liver, temperature were up and down. Me and J’s Dad were taken into a small consultation room around a day or so after the surgery. I remember so well the consultant saying that he couldn’t say whether J would make it, (how do you deal with that?) but he told us, that he was young, and that he had a strong heart, and that if he were a betting man, he would bet on J pulling through. This was one bet I was going to take on! We never saw that Doctor again, I don’t recall seeing him on the ward and can’t remember his name, but I was so glad of his words.

With each day a new set of circumstances would arise. I would post that J’s kidneys were not functioning, and could this specifically be prayed for, I did the same with his liver, with his temperature, with anything that happened. Day after day God came through, answering prayer after prayer. Some people are sceptical about whether prayer works. I’ve never been so sure of anything, it works!

Special prayer meetings were arranged for J. They were emotional, but a great time of brining words, and encouragement to our whole family. I couldn’t make all of them, as I would often be with J, but when I was there I saw people step out in ways which I hadn’t before, this was inspiring. We were also able to pray for other people who were in intensive care at the same time as J. People whose lives were turned upside down by what was happening to them. We were able to build connections and talk to them when we would often be in the waiting area.

God is Good, he can turn a situation that was meant to turn out bad into good, not just good but truly awesome. My Dad became a Christian as a result of what happened to J. We didn’t know it, but he was praying for J, and when God answered those prayers my Dad knew what he had to do.

The time also built faith in me. It is easy to be a Christian and be faithful when life is good. What happens in your life when things go bad, when circumstances change, when illness or financial hardship hit you. How do you deal with loss or a breakdown in a relationship?

Im not sure I really knew how I would be. I certainly was not perfect, though I was told that I was dealing with the situation well. I have to admit I sometimes felt like a fraud. Was I dealing with it well, I felt like I just seemed angry a whole lot and easily irritable, surely this was not a faith filled woman of God?

BB was 13 months when J went into hospital, and 15 months when hecame out. We took him into see J once, when he had been moved to a normal ward. It was really hard on J. I took in some photos of BB that J could stick on his bed. They were up to date photos, but he didn’t want them. He wanted the photos of BB looking the way that he remembered. BB won’t remember this time, but I do believe that experiences can impact a small child. We have often discussed this.

In total J stayed in hospital for 7 weeks. It was lonely and really difficult for him. I kept diaries of his time, especially in intensive care. I was advised to do this by the nurses, so that J had a record of the missing 2 weeks of his life. Actually we have never gone through the diaries. It’s really quite a strange thing to do, though we will do this one day.

When J came out of hospital, somehow life became harder still. It was great to have him home, but he needed a lot of care, and was still very poorly. We had daily Nurse and occasional Doctor home visits. They were wonderful, we were so blessed to have them. Many of the nurses hadn’t even encountered some of what J was going through before. To be graphic when he was operated on, J had a wound 30cm in length and around 6cm in width on his abdomen. This had been stitched up, however when he was intensive care his wound had fallen open. The wound had massively reduced by the time he came home, but needed daily packing and maintaining with a special vacuum pump dressing. This was another instance when in the hospital Doctors and Nurses thought that J would not make it. A wound that size comes with many issues.

I often felt like I had too much on my plate, BB to look after and my husband to look after. Except sometimes J was harder work. He could tell me (and he did) if I wasn’t doing something right, if he needed something, meals that he wanted, what he felt like eating. I probably snapped on more than a few occasions. I was grumpy. It wasn’t like I was short of help, but you don’t always want a lot of people around you, we both craved that normal life  again (whatever normal is), though in reality we would never have a normal life again.

At his worst J plummeted to around 7 stone, he was also on a lot of strong medication which didn’t help with appetite, but with special protein drinks, things started going in the right direction. J’s appetite came back and he was eating and feeling well. He was regaining his strength  and could do more and more. In total J had around 1 year off of work. Again we were blessed, this time financially, and we never fell into any kind of hardship.

Our journey was really only just beginning and over the next couple of years J endured some difficulties with work and the last bit of his wound not healing.

(J’s wound had a sinus which would not completely heal up, this meant weekly and then monthly visits to the see the nurse. This continued for 4 years, but as I write this J’s wound has actually healed, and has not come open since the end of August, so around 6 weeks! This is amazing, previously it would heal up then pop open again every 2 weeks. Thank you God.)

4 years on, we have been blessed with another baby, LP. J is secure at work, and now works 4 days a week. He was able to spend some time studying with our church, and was made a church elder, we have been able to lead a life group at church, and our life is good.

We have realised that you can work all the hours you want, make lots of money, have the things that you want, (at the time of the surgery J had been working Mon-Fri and on top of that two of the days were 12 hour days!) but none of this can ever compare to the Love that God has for us. We have each other, 2 wonderful children, a home, a great family, wonderful friends, support. J is healthier than he has been in a long time, since even before the surgery.

We may have to compromise on some things now, but it really is a small price to pay. Sure sometimes we forget, and go careering back down a path where we feel that some of the things I mentioned above are more important than they actually are. We worry, letting anxiety and stresses creep in. We feel like things are sometimes just too difficult, we get too tired, family stresses and strains and mainly exhaustion have a lot to answer for.

We have been on a real journey with Crohns. There are many more things, I could write, there were some extra minor surgeries on the way, other issues we had to deal with, a lot of backwards and forwards to hospital, it became a bit like a second home. J’s perspective is different from mine, and he has experienced things that I cannot even begin to understand.

However all the time we must come back to God in all that we do. He has brought us this far, he has rescued us. He has started a mighty work in us, one that we know he wants to see though to completion. Life will throw us some more issues, that’s a definite, but in God we can do all things. In our weakness he is made strong.